tag:blogger.com,1999:blog-16358665147312908162024-03-12T10:42:01.946-07:00Raynauds Scleroderma Global PatientsIn 1997 I was diagnosed with scleroderma and given a 15month prognosis. In 1998 I became a patient at the Scleroderma Unit. The cause and cure to both Scleroderma and Raynaud's remain unknown. Please donate to help fund medical research where 100% of your donation will be used for research purposes only.
The Royal Free Hospital has the largest centre specialising in scleroderma in the UK led by Professor Chris Denton.
#SclerodermaFreeWorld #RaynaudsFreeWorld #ResearchNicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.comBlogger302125tag:blogger.com,1999:blog-1635866514731290816.post-55294290664497854422019-03-28T01:04:00.000-07:002020-03-09T12:26:29.925-07:00Gift In My Will, Nicola Whitehill. AUTOIMMUNE DISEASE AWARENESS MONTH. Scleroderma, Raynaud's, Autoimmune Rare Disease.<div align="center" class="MsoNoSpacing" style="text-align: center;">
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">AUTOIMMUNE DISEASE AWARENESS MONTH.</span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/raynaudsunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://sclerodermarf.blogspot.com/" target="_blank"><span style="color: blue;">sclerodermarf.blogspot.com</span></a> </span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsrf.blogspot.com/" target="_blank"><span style="color: blue;">raynaudsrf.blogspot.com</span></a></span></span></span></span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">There is currently
no known cure for scleroderma, with little knowledge of its cause. Due to the
low incidence in patient numbers, as a rare disease, this presents challenges
in the conducting of clinical trials.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Over the past 20
years, I have taken part in several clinical trials at the Scleroderma Unit
under the supervision of Professor Chris Denton. These trials are essential to
improving understanding of the disease, as well as, the identification of
better medicines. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I most certainly
experienced an improvement in my symptoms as a result of one of these clinical
trials.<span style="mso-spacerun: yes;"> </span>Sadly, once the trial had
completed, I was no longer able to have the drug as it does not have a licenced
use for scleroderma, although it is licensed for other conditions. As a
double-blind placebo controlled trial, I was not privy to knowing if I had been
given the active drug or the placebo dummy.<span style="mso-spacerun: yes;">
</span>However, the improvement in my mobility and MSK pain was nonetheless a
very clear positive and welcome outcome.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To know that there
is a medicinal ‘something’ which could help to improve my symptoms and which,
further to more clinical research, may become available to my diagnosis in the
future, fills me with hope: hope that my personal daily reality may be improved
one day.<span style="mso-spacerun: yes;"> </span>And speaking from my own
personal experience, I am certain that newly diagnosed patients will almost
certainly benefit from future research developments.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am immensely
grateful to the Scleroderma Unit, Professor Chris Denton, and the NHS for
keeping me alive, decades beyond my initial prognosis at the time of my initial
diagnosis, and way beyond what I could ever have expected was possible.
However, investment in medical research is still desperately and urgently
needed to eliminate this very cruel, debilitating, and life changing disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">There are exciting
developments at the Royal Free including expansion of the Institute of Immunity
and Transplantation, which includes the scleroderma clinical service.<span style="mso-spacerun: yes;"> </span>The new Pears Building and associated
expansion of specialist research opportunities offer a concrete example of what
is possible with investment and effort and will ensure that cutting edge laboratory
facilities are available in the future.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As mentioned in my
last <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">blog</span></a>, I recently decided to write my Will to make sure my loved ones will
be looked after when the inevitable finally happens. I also decided to include
the Scleroderma Unit at the Royal Free Hospital in my Will because I want to
continue to support their world-class, ground-breaking and much needed medical
research into scleroderma, and I know that my legacy gift will make a real
difference to the work of the Unit.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Making my Will using
the Royal Free Charity’s free Will writing service could not have been easier.
I am extremely impressed with the professionalism of the service which I
received from the independent service provider. The whole process was treated
with sensitivity and at no time did I feel under any pressure or obligation
from the Royal Free Charity. I chose in my own time which firm and who I wanted
to assist me with the contents of my Will. The local solicitor was efficient
and thorough, making the experience a little more comfortable by not drawing
out the process. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I feel a huge sense
of relief and peace of mind from knowing that my personal affairs will be
honoured, as by my wishes, and that the people and causes I care most about
will benefit when I am no longer here.<span style="mso-spacerun: yes;"> </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">You can get more
information about this free and independent Will writing service from the Royal
Free Charity website at: </span><a href="http://www.royalfreecharity.org/" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">www.royalfreecharity.org</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> or by emailing the
Royal Free Charity Legacies Manager at: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="mailto:rf.legacies@nhs.net" target="_blank"><span style="color: blue;">rf.legacies@nhs.net</span></a>. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<img border="0" data-original-height="972" data-original-width="715" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRM06draEoXLKj9NBtLV8HMAyqylt-dgZZJf1LhxBsjDRX7XM9TAKAkrDDczQdWKWTfOCGltb0y2_2Gxd7Bt-xnFAZiY0_2V26luHLSw4oLaZvvv-9hWfbcgT-rW9tEz4HSXAy1kvXyyg/s320/NW+NIHR+Rare+Disease+Day+20.jpg" width="235" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<img border="0" data-original-height="771" data-original-width="1100" height="224" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcaS6bOSvjWdTI_EPrGZcDRd0zuyXUDA4-N3Cl3LukYTON-xaOZj801bK4YqeyE37BSN9i5PQnP4SkRf7xtUHYvNP5vJA67FzAQwqq3UNNjpph_eW6CoQ1rOZEEge4L5D9nwheGUL8oTM/s320/Rare+Disease+Day+2019.jpg" width="320" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_MnBuZr_Can3fqsFFJoG_-2rQG2s_JB4jJiX1Nmyeop3Y-o96LwSMSsNg60Ct3rTnXvTjuRYOAXhphOknAMRPYVquB8ITsYXWGC6NaRACcdwQJjBD-s6eTaOc91FWbRkou_QTkn-7tU/s400/Westminster-20160302-NWeskimo.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnuh3-5KpSuPK72Q3o2cRyhlDG0_hbU4cM8bLsXzTH5dljZ4DRQbJ18jTnN5oYI2xVN27PZ0m1NgmgFKokbbmx9_I-EdgLg0jO8p-XfIVJKF8QuSS9Nco0wX1Y3qJzD_iVKmChflsdxbw/s400/2016+Day+30.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">(expert specialist as the clinical lead).</span></span> </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQecKgdOZoiUN5MztR7PLe42WtewQ7eSWfhKvxjW5KNChodxF9bfcOa8bwRUUQM-BmNTNdQWOs4gD3Yy9ViPtabwmYacLWCB-Jb-IHa-JhyqEuzfnPgTP2NWpieQehH5nS8Yp_8XjlgC_f/s400/2019+Feels+like.jpg" width="276" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">June 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1440" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnUBiegKi3u4tV3zBbMtw7XhbXAopN07y3uVTE18SmWeI2W5bFQifUHF_qjKZKES19zUxUenwg3r914-PQ-fg847TsRHSrfMftFDbATOWXrduHYcmWt0-RdOssPIqFc0MwN-Qy1UYvkSJO/s640/Chat+mag+16.5.19.jpg" style="margin-left: auto; margin-right: auto;" width="354" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
<br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><br /></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>Raynaud's</b>: </span></span></span> </span></div>
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<br /><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/LwEMpz77N_I/0.jpg" src="https://www.youtube.com/embed/LwEMpz77N_I?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span> </span></span></span></span><br />
<br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">AUTOIMMUNE DISEASE AWARENESS MONTH.</span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/raynaudsunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a> </span></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsrf.blogspot.com/" target="_blank"><span style="color: blue;">raynaudsrf.blogspot.com</span></a></span></span></span></span> </span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-78091286678420110732019-03-19T01:03:00.000-07:002020-03-09T12:32:30.669-07:00Planning for the Future, Nicola Whitehill. AUTOIMMUNE DISEASE AWARENESS MONTH. Scleroderma, Raynaud’s. Rare Autoimmune Disease.<!--[if gte mso 9]><xml>
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Name="List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 5"/>
<w:LsdException Locked="false" Priority="10" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Closing"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Signature"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="true"
UnhideWhenUsed="true" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Message Header"/>
<w:LsdException Locked="false" Priority="11" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Salutation"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Date"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Heading"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Block Text"/>
<w:LsdException Locked="false" Priority="0" SemiHidden="true"
UnhideWhenUsed="true" Name="Hyperlink"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="FollowedHyperlink"/>
<w:LsdException Locked="false" Priority="22" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="0" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Document Map"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Plain Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="E-mail Signature"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Top of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Bottom of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal (Web)"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Acronym"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Address"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Cite"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Code"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Definition"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Keyboard"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Preformatted"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Sample"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Typewriter"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Variable"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal Table"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="annotation subject"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="No List"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Contemporary"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Elegant"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Professional"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Balloon Text"/>
<w:LsdException Locked="false" Priority="39" Name="Table Grid"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Theme"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="0" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" QFormat="true"
Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" QFormat="true"
Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" QFormat="true"
Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" QFormat="true"
Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" QFormat="true"
Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" QFormat="true"
Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
UnhideWhenUsed="true" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="TOC Heading"/>
<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
<w:LsdException Locked="false" Priority="46" Name="Grid Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="Grid Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="Grid Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 4"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 5"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 5"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 5"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 5"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 5"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 6"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 6"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 6"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 6"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 6"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="46" Name="List Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="List Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="List Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 1"/>
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</div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future – Nicola
Whitehill.<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"> </span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">AUTOIMMUNE DISEASE
AWARENESS MONTH. </span></span></span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span><br />
<br />
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span><div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/raynaudsunit-royalfree</span></a> </span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
</div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
</div>
</div>
</div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a> </span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://sclerodermarf.blogspot.com/" target="_blank"><span style="color: blue;">sclerodermarf.blogspot.com</span></a> </span></span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsrf.blogspot.com/" target="_blank"><span style="color: blue;">raynaudsrf.blogspot.com</span></a></span></span></span></span> </span></div>
</div>
</div>
<br /></div>
<br />
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Over the last two decades, my condition has
enabled me to see first-hand how the Scleroderma Unit at the Royal Free
Hospital has developed and grown. The work of,<span style="mso-spacerun: yes;">
</span>and support, given by this <span style="background: white;">world-renowned
centre of <i><span style="font-family: "arial" , sans-serif; mso-bidi-font-weight: bold;">excellence</span></i> for care of patients with <i><span style="font-family: "arial" , sans-serif; mso-bidi-font-weight: bold;">scleroderma</span></i> and
connective tissue diseases</span> are simply exceptional.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The clinical trial unit is very proactive,
which provides me with immense hope that the causes of and a cure for
scleroderma will be eventually discovered, and hopefully during my lifetime. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sadly, I have also lost many friends to
scleroderma and I know that I am a lucky scleroderma patient. Lucky, as I
continue to survive, and lucky, as I have minimal internal organ involvement. I
am sure this is due to me having a relatively <b style="mso-bidi-font-weight: normal;">early diagnosis</b> and treatment plan provided by the Scleroderma
Unit. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For over 20 years, I have lived with the daily
uncertainty as to whether my disease would ravish my body to the point that
medical intervention is futile. It only follows that any sensible person in my
position would sort out their personal affairs.<span style="mso-spacerun: yes;">
</span> </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This has made me think about what my wishes would be, in looking after
my loved ones when I am no longer here, and to think about my making my Will,
so that I can have peace of mind that my wishes will be followed.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As a patient, I am immensely grateful for the
work and support of the Scleroderma Unit over the last 20 years. As a world
leader in its field, the Unit’s input into global partnerships and
collaboration is crucial for the advancement of medical research.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">So as well as looking after my loved ones, this
is why I am leaving a gift in my Will to the Scleroderma unit. I know that the
money will be used to support global medical research into treatments, and
eventually a cure for Scleroderma.<span style="mso-spacerun: yes;"> </span> </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
have decided that there is no time like the present, and I have taken advantage
of the free Will writing service offered by the Royal Free Charity to make my
Will, and to ensure my wishes are fulfilled. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Making my Will could
not have been easier. I am extremely impressed with the professionalism of the
service which I received from the free and independent Will writing scheme. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The whole process
was treated with sensitivity and at no time did I feel under any pressure or
obligation to rush the process. I chose which firm, and who, I wanted to assist
me with the contents of my Will. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The local solicitor was efficient and
thorough, making the experience a little more comfortable by not drawing out
the process. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I feel a huge sense
of relief and peace of mind from knowing that my personal affairs will be
honoured, as by my wishes, and that the people and causes I care most about
will benefit when I am no longer here.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">You can get more information about this free
Will writing service from the Royal Free Charity website at: <a href="http://www.royalfreecharity.org/" target="_blank"><span style="color: blue;"><span class="MsoHyperlink">www.royalfreecharity.org</span></span></a>
or by emailing the Royal Free Charity Legacies Manager at: <a href="mailto:rf.legacies@nhs.net" target="_blank"><span style="color: blue;"><span class="MsoHyperlink">rf.legacies@nhs.net</span></span></a><span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span></span><br />
<br />
<br />
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwBbZTcEq4o2VEIk5D7uJb1RL2HwY8T2fT6adnFRt30Nf5sMnoknDPCXbIkXjjNfBZ9VSJmskSoj-VwkuSvIiPJuF1DA2Phs2pIqQchWhoT2WaOB9tyrzrpN6oMMC-ogD7vi3EtIT7Wg9Z/s640/SURF+Family+Day+2020.jpg" width="640" /> </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<br /></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<br /></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<br /></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<br /></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
<div class="MsoNoSpacing" style="margin-left: 72.0pt; text-align: justify; text-indent: 36.0pt;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
<div class="MsoNoSpacing" style="margin-left: 72.0pt; text-align: justify; text-indent: 36.0pt;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<img border="0" data-original-height="972" data-original-width="715" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRM06draEoXLKj9NBtLV8HMAyqylt-dgZZJf1LhxBsjDRX7XM9TAKAkrDDczQdWKWTfOCGltb0y2_2Gxd7Bt-xnFAZiY0_2V26luHLSw4oLaZvvv-9hWfbcgT-rW9tEz4HSXAy1kvXyyg/s320/NW+NIHR+Rare+Disease+Day+20.jpg" width="235" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnuh3-5KpSuPK72Q3o2cRyhlDG0_hbU4cM8bLsXzTH5dljZ4DRQbJ18jTnN5oYI2xVN27PZ0m1NgmgFKokbbmx9_I-EdgLg0jO8p-XfIVJKF8QuSS9Nco0wX1Y3qJzD_iVKmChflsdxbw/s400/2016+Day+30.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">(expert specialist as the clinical lead).</span></span> </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQecKgdOZoiUN5MztR7PLe42WtewQ7eSWfhKvxjW5KNChodxF9bfcOa8bwRUUQM-BmNTNdQWOs4gD3Yy9ViPtabwmYacLWCB-Jb-IHa-JhyqEuzfnPgTP2NWpieQehH5nS8Yp_8XjlgC_f/s400/2019+Feels+like.jpg" width="276" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">June 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1440" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnUBiegKi3u4tV3zBbMtw7XhbXAopN07y3uVTE18SmWeI2W5bFQifUHF_qjKZKES19zUxUenwg3r914-PQ-fg847TsRHSrfMftFDbATOWXrduHYcmWt0-RdOssPIqFc0MwN-Qy1UYvkSJO/s640/Chat+mag+16.5.19.jpg" style="margin-left: auto; margin-right: auto;" width="354" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
<br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><br /></span>
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>Raynaud's</b>: </span></span></span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span> </span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">research</span></a> at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit,The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span><br />
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click <a href="https://www.royalfreecharity.org/donate/scleroderma-raynauds" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
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<img border="0" data-original-height="360" data-original-width="360" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmQEPL-h4GqpRTw9feQOJliPHm-iJLrbRo9BnEyorUEn7irr42MBja6e7hI29VviE_MYE5LCFmfLu7yd00VwUVg1ePnd-w8lnV1PHihs8NXEaVdnchfm2woAy5zDa83140rosI1upS6qR7/s320/NW+fb+profile+pic+2020+.jpg" width="320" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future – Nicola
Whitehill.<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"> </span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">AUTOIMMUNE DISEASE
AWARENESS MONTH. </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/raynaudsunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://sclerodermarf.blogspot.com/" target="_blank"><span style="color: blue;">sclerodermarf.blogspot.com</span></a> </span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsrf.blogspot.com/" target="_blank"><span style="color: blue;">raynaudsrf.blogspot.com</span></a></span></span></span></span> </span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-72786071568778657112019-02-28T00:05:00.000-08:002020-03-09T12:43:24.711-07:00Rare Disease Day 2019: Bridging Health and Social Care. Leaving a Legacy Gift by Nicola Whitehill. Scleroderma, Raynaud's, Autoimmune Rare Disease. <div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="771" data-original-width="1100" height="448" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDFkdVvMG1YCph67qy3Slh9Go9Tb-dnaQ8dsVkyZjXbPxd-dcSIUZrox9wZbiE5GGBgpdq41W60yF5WwXBBcniBYhpN_iAcN1lWK5fga2alohW9hrlAigFbCVY3ZkCWcg1WkCRm5b619k/s640/Rare+Disease+Day+2019.jpg" width="640" /> </div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day 2019 Theme: Bridging Health and Social Care</span></b></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Leaving
a Legacy Gift by Nicola Whitehill </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span><br />
<br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span><div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/raynaudsunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a> </span></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://sclerodermarf.blogspot.com/" target="_blank"><span style="color: blue;">sclerodermarf.blogspot.com</span></a> </span></span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsrf.blogspot.com/" target="_blank"><span style="color: blue;">raynaudsrf.blogspot.com</span></a></span></span></span></span> </span><br />
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<img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSiYiPc271RsN9NYKyj_HtZGAozNMgOyghHNzhX2VR17ZrZP_DVHABXdGC8xdvWewcaUpOuXoWxbzfI7m17Tn3Rghp0bLqi4eHcp092I7UdrvGpRKs_BXhdgRAw8GW86Rjq_QtvldWdfA/s400/NW+RF+27.9.17.JPG" width="225" /> </div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Recently, I celebrated my 20<sup>th</sup> year
anniversary of being a patient at the Scleroderma Unit, The Royal Free
Hospital. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">At that time, December 1998, I would never have
believed that this was going to be possible. This was the first time of having
dragged my ‘tin man’ body, to the Unit. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">And furthermore, I would not have believed that
I would eventually out-survive both of my parents, due to my aggressive
symptoms. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">The previous year, my local rheumatologist
diagnosed me with the rare autoimmune disease, scleroderma. A year of taking
immunosuppressants and chemotherapy followed, with no clinical effect, other
than intolerable side effects. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">In December 1998, I transferred my medical care
to the world class expert centre, the Scleroderma Unit. I was inspired by the
global scleroderma trailblazers Dame Professor Carol Black and Professor Chris
Denton. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I am eternally grateful for their expertise and
support, especially during my initial years, and without whom, achieving my
personal goal of becoming a barrister / professional advocate, would not have
been possible. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">My experience shows that an early diagnosis is
paramount in an attempt to prevent potential life threatening damage, and that
a well-resourced and funded expert centre is therefore paramount to best
patient care. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Ever since first having heard those
life-changing words ‘You have scleroderma’, I have thought about my mortality,
daily. This was heightened during the time of taking various infusions in an
attempt to suppress the disease activity. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I was forced to delay my goal by a year, as I
was wired up to a drip at the time of my scheduled examinations. But in July
2001 I was ‘called to the Bar’ at Gray’s Inn, London, and I am truly grateful
to the Unit for helping me achieve this. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">In March 2004, I completed my training and
studying and became a qualified barrister. In the back of my mind however, I
was unsure as to how long I could keep the scleroderma away, and at a
manageable level. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Yet in November 2016, Professor Chris Denton
told me that ‘my skin was cured from scleroderma’. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">There is still currently no known cure for
scleroderma, with little knowledge of its cause. Due to the low incidence in
patient numbers (scleroderma being a rare disease), it is crucial that
resources and funding are found so that medical databases are compiled to
provide valuable research data and information. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">The Royal Free Scleroderma Unit keeps a
database of patients to look for and identify common features in patient data.
</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">As a passionate supporter, I have started to
think about how I can best support the Scleroderma Unit and help it when I am
no longer here. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I browsed the information on the many ways in
which the Royal Free charity helps supports the work of the Royal Free Hospital
and the Scleroderma Unit on the charity website. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I contacted the Charity and they sent me a very
easy to read booklet about making my Will. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">This booklet has helped me to understand the
importance of doing this, as well as helping to inform me about the easiest and
most convenient ways for me to do so. </span></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This booklet is available for free by
contacting and asking for the Legacies Manager at the Royal Free Charity or by
sending an email to: <a href="mailto:rf.legacies@nhs.net" target="_blank"><span style="color: blue;"><span class="MsoHyperlink">rf.legacies@nhs.net</span></span></a> </span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">June 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1440" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnUBiegKi3u4tV3zBbMtw7XhbXAopN07y3uVTE18SmWeI2W5bFQifUHF_qjKZKES19zUxUenwg3r914-PQ-fg847TsRHSrfMftFDbATOWXrduHYcmWt0-RdOssPIqFc0MwN-Qy1UYvkSJO/s640/Chat+mag+16.5.19.jpg" style="margin-left: auto; margin-right: auto;" width="354" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span> </span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click <a href="https://www.royalfreecharity.org/donate/scleroderma-raynauds" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Leaving
a Legacy Gift by Nicola Whitehill </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/raynaudsunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://sclerodermarf.blogspot.com/" target="_blank"><span style="color: blue;">sclerodermarf.blogspot.com</span></a> </span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsrf.blogspot.com/" target="_blank"><span style="color: blue;">raynaudsrf.blogspot.com</span></a></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"></span></span></span></span></span>Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-50517017228567820702019-02-20T05:38:00.000-08:002020-02-29T09:39:30.022-08:00Scleroderma Family Day - Saturday 2nd May 2020. 25th anniversary. Provisional Programme. Scleroderma, Raynaud's, Autoimmune Rare Disease.<div style="text-align: justify;">
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwBbZTcEq4o2VEIk5D7uJb1RL2HwY8T2fT6adnFRt30Nf5sMnoknDPCXbIkXjjNfBZ9VSJmskSoj-VwkuSvIiPJuF1DA2Phs2pIqQchWhoT2WaOB9tyrzrpN6oMMC-ogD7vi3EtIT7Wg9Z/s640/SURF+Family+Day+2020.jpg" width="640" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma,
Raynaud's, Autoimmune Rare Disease. </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;"><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></b></span></span></a><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></b></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif;">#RaynaudsFreeWorld
#SclerodermaFreeWorld</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">blog.raynaudsscleroderma.co.uk</span></span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<img border="0" data-original-height="972" data-original-width="715" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRM06draEoXLKj9NBtLV8HMAyqylt-dgZZJf1LhxBsjDRX7XM9TAKAkrDDczQdWKWTfOCGltb0y2_2Gxd7Bt-xnFAZiY0_2V26luHLSw4oLaZvvv-9hWfbcgT-rW9tEz4HSXAy1kvXyyg/s320/NW+NIHR+Rare+Disease+Day+20.jpg" width="235" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_MnBuZr_Can3fqsFFJoG_-2rQG2s_JB4jJiX1Nmyeop3Y-o96LwSMSsNg60Ct3rTnXvTjuRYOAXhphOknAMRPYVquB8ITsYXWGC6NaRACcdwQJjBD-s6eTaOc91FWbRkou_QTkn-7tU/s400/Westminster-20160302-NWeskimo.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">(expert specialist as the clinical lead).</span></span> </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQecKgdOZoiUN5MztR7PLe42WtewQ7eSWfhKvxjW5KNChodxF9bfcOa8bwRUUQM-BmNTNdQWOs4gD3Yy9ViPtabwmYacLWCB-Jb-IHa-JhyqEuzfnPgTP2NWpieQehH5nS8Yp_8XjlgC_f/s400/2019+Feels+like.jpg" width="276" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ZuswSyFmIIiUZ8QSx5VDCl1jwi_i-7CDHPBfNh5Ma-dAy-aeU6Qw2QJ0p-Y3iJVK3AcBPUV44Fte6LauyuS0kmmOKgJYydhHVXC-R6gYnr9TkeCw5lXlT-RK4vmsh3zlXbAyPQ-5rgU/s320/NW+%252B+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="176" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
<br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><br /></span>
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>Raynaud's</b>: </span></span></span> </span></div>
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<br /><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/LwEMpz77N_I/0.jpg" src="https://www.youtube.com/embed/LwEMpz77N_I?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
</div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;"><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></b></span></span></a><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></b></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">blog.raynaudsscleroderma.co.uk</span></span></a></span></span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-33191154137262541212019-01-21T02:52:00.001-08:002020-02-29T10:22:49.737-08:00A New Year and New Challenges. 2019. Scleroderma, Raynaud's, Autoimmune Rare Disease. Nicola Whitehill.<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="771" data-original-width="1100" height="448" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_Y0UO-Tny4TRrkSA86c7ceig8m0_onrsXrnHUvccjgPnIkRSgTxe2avJHuFOHeO06E_e1r0h4PBItkhnBJH7n84Rw30exVzaK1WVQu508VcwI0ESAsj2whcjn2i9hQeYH8K5hwcLy9eI/s640/LD+New+Year+2019.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">A New
Year and New Challenges. 2019. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma,
Raynaud's, Autoimmune Rare Disease. </span></div>
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<a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;"><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></b></span></span></a><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></b></span><br />
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<span style="font-family: "arial" , sans-serif;">#RaynaudsFreeWorld
#SclerodermaFreeWorld</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
</div>
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<a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">blog.raynaudsscleroderma.co.uk</span></span></a></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">A new year is now upon us, with the seasonal holiday festive time a fond
memory. </span></div>
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<img border="0" data-original-height="1440" data-original-width="1072" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-yJ2Widr2v9Ts9SEKWDPdxUmSKwPQuwD8WUyrNM75Sz8Bc6x305mZN2kuQYyTAWJV0Qlb1g0YtPD8f1uOfkqmUyry0ouQVQcSByPpp0VggAUvx7NKhrrwtFcsY3nHaJqTZTXQXqtOIV4/s320/Mitzy+and+Daisy+Dec+2018.jpg" width="238" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As patients living with a chronic, progressive and degenerative rare
disease, we know only too well that, there is no holiday from our daily myriad
of symptoms. The holidays can be quite an isolating and difficult time, as
often, it is just not physically possible to interact or 'join in'. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am super vigilant with avoiding situations which could increase my
risk of catching any viral or other infection. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although I am now 14 years <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/my-scleroderma-and-chemotherapy.html" target="_blank"><span style="color: blue;">immunosuppressant and chemotherapy free</span></a>, my immune system is still very weak. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">On a 'normal day', my
body feels as though it has flu by way of my continual musculo-skeletal aches
and pains. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My '<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/03/living-dream-as-real-life-tin-man.html" target="_blank"><span style="color: blue;">tin man</span></a>' body, along with
chronic <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue;">fatigue</span></a> and <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue;">mobility</span></a> challenges, remain
constant sources of <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-job-today-is-to-simply-get-better.html" target="_blank"><span style="color: blue;">frustration</span></a>. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Over here in the northern hemisphere we have entered into the season of
winter. Winter is my <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-raynauds-and-scleroderma-patients.html" target="_blank"><span style="color: blue;">nemesis season</span></a>. </span></div>
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<br /><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/bpYQHId0wQ4/0.jpg" src="https://www.youtube.com/embed/bpYQHId0wQ4?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mentally and physically, this is the most challenging time of year for
me. <a href="https://www.youtube.com/watch?v=9TRijTzcwyg" target="_blank"><span style="color: blue;">Video</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 was particularly challenging for me due to extra complications such
as <a href="http://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">skin cancer</span></a>, <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">dental issues</span></a>, <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">calcinosis</span></a>, and an index finger <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">ulcer</span></a>. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am still fragile from having started the
year with shingles. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My / These <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">unmet clinical needs</span></a> were replicated during my
global patient profile <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">campaigns</span></a> for Scleroderma Awareness Month in 2017
and 2018. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Telangiectasia</span></a>, <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">sclerodactyl hands</span></a>, and <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">gastrointestinal</span></a> issues were common symptoms
among patients. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-GloEzwqBknQ1B174JyTCerLwYFuZdmD4RsEmATOhrCUeLPx5C2wx4A1dIWAW1SzCkR0POEUVDr5ZW8gpxR_qBfNcHl3CqRPZ4D77j7-Xibjd0cWJkPzxfWa9KhgwSzVed6pVjZPjYzQ/s320/NW+passport+photo+18.9.18.JPG" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Telangiectasia 18.9.18</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am delighted to have survived this Christmas without experiencing a
medical emergency which required urgent medication. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For, last year, on Christmas Day, I developed a very painful shingles
rash, covering my abdomen and back. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This has kept me under 'house arrest' for most of 2018. And,
disappointingly, forced me to not be able to attend the <a href="https://blog.raynaudsscleroderma.co.uk/2019/02/scleroderma-family-day-saturday-18th.html" target="_blank"><span style="color: blue;">annual family day</span></a> at the Scleroderma Unit, The
Royal Free Hospital in May. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I was disappointed to not meet the lovely family of the late <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/kevin-east-rip-5th-jan-1967-7th-jan.html" target="_blank"><span style="color: blue;">Kevin East</span></a>, RIP 5th Jan 1967 -
7th Jan 2016, who held a charity golf day, and fund raised
£2000. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As well as, I was disappointed to not be able to meet many other very kind and generous fundraisers for medical
research at the Scleroderma Unit, and fellow patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>Saturday 18th May 2019 is this year's date
for the annual event.</b> </span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="1475" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY8G2hlLAlKsJ3prj006TpVj6cvb4Z1PBdsKntofFNfXThIE-FjKADTDt3QS4gagC7w92_X9v4LcM0J9xIK2xWBaJl4rchnob-5GxOVqwMFjNwwpwdGMPG42Iv2YKanX7yraj1LqaCWxE/s320/Kev+East+family+and+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="294" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton with Kevin's wife, Debby and Michelle, one of their 3 children</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please hold Kevin's
family in your prayers at this time, for this is Kevin's anniversary time of
year.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 I celebrated <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">20 years of being a patient</span></a>
at the Unit. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to Prof Chris Denton and the NHS for <a href="http://blog.raynaudsscleroderma.co.uk/2018/09/happy-70th-birthday-to-nhs-thank-you.html" target="_blank"><span style="color: blue;">keeping me alive</span></a>. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I was also disappointed to not be able to attend the charity boxing
match in memory of <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/chris-milan-uk-rip-10659-4317-patient.html" target="_blank"><span style="color: blue;">Chris Milan</span></a>. </span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="624" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3y2vydTFEOEZ3b__6odeVQyXeVdAMUycYLv8y09vv-FyckXKsAXc7iWLKbPqbwuGsmbSR74p7Kom4XSnOae_yIdEVvcc1-AWI2BLVzxRyo0hDGOODXpkfZEXhcUJhkJoDBWbbimjOMac/s320/17353417_1820558638161608_6825930071267810421_n.jpg" style="margin-left: auto; margin-right: auto;" width="208" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">RIP Chris </span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Huge thanks to
<a href="https://www.justgiving.com/fundraising/ben-milan2" target="_blank"><span style="color: blue;">Ben</span></a> for raising an enormous £</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">34,873.80, in memory of his dad, which will be
used for medical research only, at the Scleroderma Unit. </span></div>
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<img border="0" data-original-height="950" data-original-width="750" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ5yetnXVD5YddgNl9MizykK3wkrRptkYwKGZRBEWMszMzMC8AVrN1rp9QMQ0evcmjMqNjGhfteUgRliZg0iy33LhXpo2Ew8jzqDJKYIImxZrqETd9sBJKus_9FT4FvP6OP555fIVKzrY/s200/Ben+Milan+boxing.jpg" width="157" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">However, the holiday season did not allow me any respite with my
scleroderma 'added extra' surprises. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">On Christmas Day, my right hand flared.
This caused a huge lump of solid and liquid calcium to ooze. The pain was, and
is, nausea inducing. My joints still remain inflamed, swollen and painful, with
the calcium continuing to ooze.</span></div>
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<img border="0" data-original-height="1548" data-original-width="1152" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgymFci_7CLIk1wkGS4cdx9_LkKi8GiTpDDfgk2HdmfVA-SXk-ikfzNLeuW-ex7B2M2f28syJxmbmJ94PvRiLjbcfrtqRXlEqwsqA0CHAm3F7jr9ZFzHYtQ8Ky3X4bdWHmy-u-xVB8tC48/s320/NW+Calcinosis+25.12.18.jpg" width="238" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am right handed, and so, this new calcium challenge, really is on
another level in terms of management. I am not able to stretch or move my hand
without screaming in pain. I must avoid getting the area wet, in the hope, that
the skin tissue does not become infected, thereby, heading into digital ulcer
territory. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Overall, for optimal patient care, the following are essential: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Specialist centers</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical “<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream teams</span></a>"</span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk8dbYkGayrolSMluKay-AcC3Bc-LIg_kyaNmSkJoV9ylu9by-lR-Yv-3WamHbK7rf-RsZBv_L0EH9djkbBQ9ZYDa_B09x4-N8BlGOGgv2qMAFJQSXkl1TjKm6jTuodSRsmlPt0dttl6g/s400/2016+Day+30.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/12/christmas-holiday-wishes-and-new-year.html" target="_blank"><span style="color: blue;">All I want for Christmas</span></a> and
for, every day, is: a SclerodermaFreeWorld and a RaynaudsFreeWorld. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">Medical research</span></a> provides immense hope for this
wish to be granted. <a href="https://www.youtube.com/watch?v=8tDGyJTak0A&t=4s" target="_blank"><span style="color: blue;">Video</span></a>. </span></div>
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<br /><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/N4CvisKsDDI/0.jpg" src="https://www.youtube.com/embed/N4CvisKsDDI?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Now that I am blessed to be a long-term scleroderma survivor and <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-raynauds-scleroderma-rare-disease.html" target="_blank"><span style="color: blue;">scleroderma Olympian</span></a>, I spend most of my spare
time when not tending to my symptoms committed to the
"SclerodermaFreeWorld" and "RaynaudsFreeWorld" wish. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018, I was honored to have become a <a href="https://www.nihr.ac.uk/news/nicola-whitehill-becoming-a-patient-research-ambassador-was-a-natural-next-step/8075" target="_blank"><span style="color: blue;">patient research ambassador</span></a> with the National
Institute for Health Research. (Here's a <a href="https://www.youtube.com/watch?v=Di7IuS88bKI" target="_blank"><span style="color: blue;">video</span></a>,
and here's a "Hall of Fame" <a href="https://www.nihr.ac.uk/patient-research-ambassador-stories/nicola-whitehill/9167" target="_blank"><span style="color: blue;">article</span></a>.) </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Di7IuS88bKI/0.jpg" src="https://www.youtube.com/embed/Di7IuS88bKI?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I was also honoured to be appointed as a Patient Public Voice in the NHS
England Clinical Reference Group for <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a08/" target="_blank"><span style="color: blue;">specialised dermatology</span></a>. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This is in addition to my NHS England CRG <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a09/" target="_blank"><span style="color: blue;">specialised rheumatology</span></a> role and my patient
expert <a href="https://www.ema.europa.eu/en/committees/committee-orphan-medicinal-products-comp" target="_blank"><span style="color: blue;">roles</span></a> with the <a href="https://www.ema.europa.eu/committes/working-parties-other-groups/chmp/scientific-advice-working-party" target="_blank"><span style="color: blue;">European Medicines Agency</span></a>. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In 2019, I very much hope to combine these roles to do all that I can in
helping to achieve the SclerodermaFreeWorld and RaynaudsFreeWorld wish. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much want to wish you a most prosperous 2019 and Thank you for
sharing the same daily wish in 2019: </span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">a SclerodermaFreeWorld </span></b><br />
<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></b>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">a RaynaudsFreeWorld </span></b><br />
<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></b></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Living the dream, scleroderma style. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Follow: </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="color: blue;">Facebook</span></a>: Raynauds Scleroderma Awareness — Global
Patients </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Twitter, Instagram, YouTube: @SclerodermaRF and @RaynaudsRf </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Use the hashtags #SclerodermaFreeWorld and
#RaynaudsFreeWorld. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please <a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">donate</span></a> to help fund medical research at
the <a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue;">Scleroderma Unit</span></a> of the Royal Free Hospital,
London. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">One-hundred percent of raised funds will be used
for medical research purposes <b>only</b>. Thank you. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please consider <a href="https://www.royalfreecharity.org/give/legacy-gift" target="_blank"><span style="color: blue;">leaving a gift</span></a> in your Will for medical research
at the Scleroderma Unit. </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thank You. </span> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An edited version of this article was published <a href="https://sclerodermanews.com/2019/01/09/scleroderma-new-year-challenges-advocacy/" target="_blank"><span style="color: blue;">here</span></a>, in my <a href="https://sclerodermanews.com/category/blog/" target="_blank"><span style="color: blue;">Column</span></a> with Scleroderma News. </span>January <span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019. </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<img border="0" data-original-height="972" data-original-width="715" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRM06draEoXLKj9NBtLV8HMAyqylt-dgZZJf1LhxBsjDRX7XM9TAKAkrDDczQdWKWTfOCGltb0y2_2Gxd7Bt-xnFAZiY0_2V26luHLSw4oLaZvvv-9hWfbcgT-rW9tEz4HSXAy1kvXyyg/s320/NW+NIHR+Rare+Disease+Day+20.jpg" width="235" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_MnBuZr_Can3fqsFFJoG_-2rQG2s_JB4jJiX1Nmyeop3Y-o96LwSMSsNg60Ct3rTnXvTjuRYOAXhphOknAMRPYVquB8ITsYXWGC6NaRACcdwQJjBD-s6eTaOc91FWbRkou_QTkn-7tU/s400/Westminster-20160302-NWeskimo.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">research</span></a> at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit,The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">A New
Year and New Challenges. 2019. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma,
Raynaud's, Autoimmune Rare Disease. </span></div>
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<a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;"><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></b></span></span></a><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></b></span><br />
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<span style="font-family: "arial" , sans-serif;">#RaynaudsFreeWorld
#SclerodermaFreeWorld</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
</div>
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<a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">blog.raynaudsscleroderma.co.uk</span></span></a></div>
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</span></span></span>Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-16296183889636691682018-12-30T02:05:00.001-08:002020-02-29T10:50:06.268-08:00Christmas Holiday Wishes and a New Year to Celebrate 2019. Scleroderma, Raynaud's, Autoimmune Rare Disease. Nicola Whitehill.<img border="0" data-original-height="771" data-original-width="1100" height="448" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPy8pKZmncPDGYiNY6AjY_BGPIyapyRnmqRbfiBF_szcgnMBdbRfwyLSgQwmWwTroZHoxBJLLGNTWV1p5_s5kU9u4UG9RJHnEpWzop5pJ69-ehJ_s8BZrZHU5W6Vc_UYGyIQtQ-I2uYrM/s640/Christmas+Holiday+Wishes+2019.jpg" width="640" /><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif;">Christmas
Holiday Wishes and a New Year to Celebrate 2019.</span> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The seasonal festive holiday time is almost here. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My little dream team are getting in the festive spirit by wearing their Christmas jumpers. </span><br />
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<img border="0" data-original-height="1440" data-original-width="1072" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtZBOcreoPpm_cZUmjZcr2_7GDkehAV22WHq0OjKePD7yVNkRkQfCLlSHEHNpXOgz2_cfRJ4NP23p4mRo6D-Vs18snl_PO52bOOu-n1MaKZTYF3_OkRdwWMAEPet0yGXnulSW9oDdHL4Q/s320/Mitzy+and+Daisy+Dec+2018.jpg" width="238" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As
patients living with a chronic debilitating, autoimmune rare disease,
we know all too well that, there is no holiday from our day to day
reality. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Managing the numerous and complex symptoms makes for a <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/scleroderma-raynauds-rare-disease-full.html" target="_blank"><span style="color: blue;">full time job</span></a>. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz5pHojzR7FA6Oftxs9KmcPWeFw6nWrKoMbdcVq0QMWlEB4VOxbyu9sqcgFzREjjO66rksV6CwCcEHdDhmIC1lBUVv6HfMTWLSzt86BkOWOr8YBCjheNr2_jDZE6VBLA6ylwqr7WauhUQ/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Recently, I <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">celebrated my 20th year</span></a> since first having dragged my <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/living-dream-as-real-life-tin-man.html" target="_blank"><span style="color: blue;">'tin man'</span></a> body, to the Scleroderma
Unit at The Royal Free Hospital in London, UK. </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am hugely grateful to Dame Prof Carol Black, Prof Chris Denton and the NHS, for <a href="http://blog.raynaudsscleroderma.co.uk/2018/09/happy-70th-birthday-to-nhs-thank-you.html" target="_blank"><span style="color: blue;">keeping me alive</span></a>. </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">At </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">the time of my <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/scleroderma-raynauds-rare-disease.html" target="_blank"><span style="color: blue;">initial diagnosis</span></a> in September 1997, I was told
that I had a 15month prognosis, due to the aggressive attack, which the diffuse
form of the disease, was having on my body. </span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My wish at that time was to achieve my personal
career goal of becoming a barrister, a 'Learned Friend'. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Graduation photo July 2001 </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This photo was taken when I was 'called to the Bar'
at <a href="https://www.graysinn.org.uk/" target="_blank"><span style="color: blue;">Gray's Inn</span></a> in July 2001. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This was further to my
postgraduate diploma in law and a year spent at 'Bar School'. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I then had to
shadow several barristers to complete my 'hands on' training. I am eternally
grateful to the late Ross Fitzpatrick (Mungo) and David Herbert QC for their
learned Counsel and friendship during this time. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1st March 2004, further to 7 years of <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/my-scleroderma-and-chemotherapy.html" target="_blank"><span style="color: blue;">treatments</span></a> (chemotherapy and immunosuppressants),
whilst studying and training, my wish was granted. Prof Denton was extremely
supportive throughout this time, helping me achieve my then wish.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am now 14 years chemotherapy / immunosuppressant
free. </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I take Bosentan for my <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">Raynaud’s</span></a> and I control my GI symptoms with a
strict <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">Diet</span></a>. </span> </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Over here in the northern hemisphere, </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">the season of winter has arrived</span>. </span><br />
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Winter really is my <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-raynauds-and-scleroderma-patients.html" target="_blank"><span style="color: blue;">nemesis</span></a> time of year. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
'House arrest' is my only option, in an attempt to minimise my
Raynaud's flares. Prevention is better than cure. Infact, prevention is
crucial, since there is no cure. <a href="https://www.youtube.com/watch?v=9TRijTzcwyg" target="_blank"><span style="color: blue;">Video</span></a>. </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">However, I know that for my fellow patients, <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/margie-kugler-australia-scleroderma.html" target="_blank"><span style="color: blue;">Margie</span></a>, living in the southern hemisphere, this is their favorite time of year! Sadly, RIP my lovely friend <a href="http://blog.raynaudsscleroderma.co.uk/2017/08/silvana-vidmar-14121965-22072017.html" target="_blank"><span style="color: blue;">Silvana</span></a>. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">By the time winter sets in, I am constantly cold. </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This is accompanied with continual, relentless <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue;">exhaustion</span></a>, lethargy, and <a href="http://blog.raynaudsscleroderma.co.uk/2016/06/day-25-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">pain</span></a>, causing immense </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-job-today-is-to-simply-get-better.html" target="_blank"><span style="color: blue;">frustration</span></a></span></span></span>. </span></span><br />
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<img border="0" data-original-height="720" data-original-width="1040" height="442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqiT9hqg-SohM57MI2hcpnd1iWQNbsxprGy-vGKLH60Pra-10je-mDArmjvF6ZKKm1l3Wu3ePJI_IXTzOcdRyCxxApyTPRX4T5UnUjLOARyUklLNA9G0VL8i-dGfDX1EZXm1xKsIthQk4/s640/2018+Symptoms+feels+like.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">However to look at me, people kindly tell me, "<a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">you look so well</span></a>". </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I wish that my body could feel warm all year round. </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Unfortunately, I must wear Ugg boots and gloves on the most hottest of days, in an attempt to prevent a Raynaud's flare. </span></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1063" data-original-width="666" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvB8WqiiPTyKO6aNWTwwUaoUaUOS3xsUs0GIFX3If1W1Ke6rz5T37nNk-38-4uunL0M4SmaXwQYGoI-xomrmJuCUTqmaA_b8uUuXfR5x1OAh8kCBib0VdB71p2LewzLuLktZfm00_W_fE/s320/NW+-+BEACH+2013.jpg" style="margin-left: auto; margin-right: auto;" width="200" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Hottest day of 2013</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2018,</span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> has been particularly challenging for me due to
extra complications such as <a href="http://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">skin cancer</span></a>, <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">dental issues</span></a>, <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">calcinosis</span></a>, and an index finger
<a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">ulcer</span></a>. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am still fragile from having started the year with shingles. </span><br />
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<img border="0" data-original-height="720" data-original-width="960" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGCkgQ24easdCukEOGaKarxZ9ACdHxXXNPXSJcyo7hP0KtTYwE6n-Xae_GyIegN63VTu06lShwemvSKwdFaKekxbeMLnQ5vHdWkXblohrk3cU5P6UZMfAf5wdFanG3ghEX55U3Yna5XtU/s400/NW+2018+Awareness.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">These </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">unmet clinical needs</span></a> were replicated during my global patient profile <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">campaigns</span></a> for Scleroderma Awareness Month 2017
and 2018. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Telangiectasia</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="color: black;">, <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Sclerodactyl hands</span></a> and </span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="color: black;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Gastro Intestinal</span></a> issues were also common symptoms, amongst patients. </span></span></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-GloEzwqBknQ1B174JyTCerLwYFuZdmD4RsEmATOhrCUeLPx5C2wx4A1dIWAW1SzCkR0POEUVDr5ZW8gpxR_qBfNcHl3CqRPZ4D77j7-Xibjd0cWJkPzxfWa9KhgwSzVed6pVjZPjYzQ/s320/NW+passport+photo+18.9.18.JPG" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Telangiectasia 18.9.18</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For optimal patient care, the following are
essential:</span>
<br />
<ul type="disc">
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo2; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo2; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Specialist centers</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo2; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo2; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
“<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream teams</span></a>"</span></li>
</ul>
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">All
I want for Christmas is for my Christmas / daily wish: a
'SclerodermaFreeWorld' and a 'RaynaudsFreeWorld', to be granted... </span></span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">Medical Research</span></a> provides immense hope for this wish to be granted. </span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Now that I am blessed to be a long term scleroderma survivor / <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-raynauds-scleroderma-rare-disease.html" target="_blank"><span style="color: blue;">scleroderma Olympian</span></a>, I spend most of my spare time when not attending my symptoms, committed to the </span></span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'SclerodermaFreeWorld' and 'RaynaudsFreeWorld' wish.</span></span></span></span></span></span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year,</span></span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> I am honored to have become a <a href="https://www.nihr.ac.uk/news/nicola-whitehill-becoming-a-patient-research-ambassador-was-a-natural-next-step/8075" target="_blank"><span style="color: blue;">patient research ambassador</span></a> with the National
Institute for Health Research. <a href="https://www.youtube.com/watch?v=Di7IuS88bKI" target="_blank"><span style="color: blue;">video</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'Hall of Fame' <a href="https://www.nihr.ac.uk/patient-research-ambassador-stories/nicola-whitehill/9167" target="_blank"><span style="color: blue;">article</span></a>. </span><br />
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Recently, I was appointed a Patient Public Voice on the NHS England CRG for <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a08/" target="_blank"><span style="color: blue;">Specialised Dermatology</span></a>. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This is in
addition to my NHS England CRG <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a09/" target="_blank"><span style="color: blue;">Specialised Rheumatology</span></a> role, and my patient
expert <a href="https://www.ema.europa.eu/en/committees/committee-orphan-medicinal-products-comp" target="_blank"><span style="color: blue;">roles</span></a> with the <a href="https://www.ema.europa.eu/committes/working-parties-other-groups/chmp/scientific-advice-working-party" target="_blank"><span style="color: blue;">European Medicines Agency</span></a>. </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Since
this is my last article for my column this year, I very much want to
wish you a fairy happy Christmas holiday time, and a most prosperous
2019, feeling good. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thank You for sharing the same daily wish in 2019: </span><br />
<br />
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'SclerodermaFreeWorld' </span></span></span></span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'RaynaudsFreeWorld'. </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 is already looking to be a very busy year with exciting times ahead, for this wish to be granted. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Living the dream, scleroderma style. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Follow: </span><br />
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<img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGLeqANiA_8dqHVeArbHgRE_diacsYu4570T8-ZDiFNNXw-enHAD1Ooi4xZQnahLdAMw7jK8J9a-J66uVluwTzNm_ZeGtWMjSxiFWF6aFdkfmon7Kp4R3u7eAOi8masQgZGqSeONkZgqo/s320/RSA+rdd+2018+fb+profile.jpg" width="320" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="color: blue;">Facebook</span></a>: Raynauds Scleroderma Awareness — Global
Patients </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Twitter: @SclerodermaRF and @RaynaudsRf </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Use the hashtags #SclerodermaFreeWorld and
#RaynaudsFreeWorld. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
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<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH7INQYP0id-SIrje4utw75zcbPqE6veOe8eMB7HCp-KTS6jeDpN7GeANkv82rPopCE3E74FIvm_1xOayKcaOlFEfDJpl03aZyMEmLLYDuA-gpLZAVetObXuiuHxgiETmjZhx01gXEkdQ/s640/SURF+2018+JG.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please <a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">donate</span></a> to help fund medical research at
the <a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue;">Scleroderma Unit</span></a> of the Royal Free Hospital,
London. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">One-hundred percent of raised funds will be used
for medical research purposes <b>only</b>. Thank you. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please consider <a href="https://www.royalfreecharity.org/give/legacy-gift" target="_blank"><span style="color: blue;">leaving a gift</span></a> in your Will for medical research
at the Scleroderma Unit. Thank You. </span> </span><br />
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<img border="0" data-original-height="470" data-original-width="800" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4QN-mRGF1K_AB_cAoXL2990-6bRcsxiIoYW3_jlJaQ3FzKAdQPFXHLE2QJN8Fy-LWYsqvBcrhCmFvqxWuph-q4rTo1VFE7tKH-18Y_Cut9YrFtzOQoe6BIrL3UIuQffzk52xyoNzigXc/s400/13690825_916172558511837_1552497729413727204_n.png" width="400" /> </div>
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<img border="0" data-original-height="320" data-original-width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRYf8wa4D9mWOPdvQNNG4aM6VTEFj15LjFRA-Q0-auxdFOYRBeN4d45KQFlP4slpKQ_q1DWpBT4CODPgmKSPPnGZPbKCbhC9ZSXeoje27QxcZP001GdzNXGRZ5yq5RQO86PwrV__uT4xM/s1600/NW+Raynauds+twibbon.jpg" /></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">Living the dream, scleroderma style. </span><br />
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<img border="0" data-original-height="423" data-original-width="719" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUDiE9ItkkFR8Z0vFZEIefQYaM5Fdu5118faaozS4hkEMqLpTqtKk-WBLQqKNhKhYzq6J0ArxlOXMcfxAnFrgTY38TwDw-FjYdUxSgOQ_bdn7sdyU-V-B83YUZgpXdfmV11pAYIKqs1YU/s400/TwImg-20160809-232349.jpg" width="400" /></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An edited version of this article was published <a href="https://sclerodermanews.com/2018/12/19/scleroderma-christmas-wishes-new-year-celebrate/" target="_blank"><span style="color: blue;">here</span></a>, in my <a href="https://sclerodermanews.com/category/blog/" target="_blank"><span style="color: blue;">Column</span></a> with Scleroderma News. </span>December <span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018. </span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<img border="0" data-original-height="771" data-original-width="1100" height="224" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcaS6bOSvjWdTI_EPrGZcDRd0zuyXUDA4-N3Cl3LukYTON-xaOZj801bK4YqeyE37BSN9i5PQnP4SkRf7xtUHYvNP5vJA67FzAQwqq3UNNjpph_eW6CoQ1rOZEEge4L5D9nwheGUL8oTM/s320/Rare+Disease+Day+2019.jpg" width="320" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQecKgdOZoiUN5MztR7PLe42WtewQ7eSWfhKvxjW5KNChodxF9bfcOa8bwRUUQM-BmNTNdQWOs4gD3Yy9ViPtabwmYacLWCB-Jb-IHa-JhyqEuzfnPgTP2NWpieQehH5nS8Yp_8XjlgC_f/s400/2019+Feels+like.jpg" width="276" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1440" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnUBiegKi3u4tV3zBbMtw7XhbXAopN07y3uVTE18SmWeI2W5bFQifUHF_qjKZKES19zUxUenwg3r914-PQ-fg847TsRHSrfMftFDbATOWXrduHYcmWt0-RdOssPIqFc0MwN-Qy1UYvkSJO/s640/Chat+mag+16.5.19.jpg" style="margin-left: auto; margin-right: auto;" width="354" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif;">Christmas
Holiday Wishes and a New Year to Celebrate 2019. </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-23605109008450945952018-12-14T05:37:00.001-08:002020-02-29T11:12:41.160-08:00Celebrating 20 years at the Scleroderma Unit, The Royal Free Hospital, UK. Nicola Whitehill. Scleroderma, Raynaud's, Autoimmune Rare Disease.<div class="MsoNormal" style="line-height: normal; text-align: center;">
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<img border="0" data-original-height="771" data-original-width="1100" height="448" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi87II5w5X8jM2HxdibrRBpRQNeRRGvQKyAs-xwMkx1pBg-Ne4YSr9UUsjn6jomcd0PTkZPX9ER8ThNMsFhlAjmXW_iI8HuFkminmuvVAEUnVKlEhpUU585LdUVGZ2fjPvVUF4ug2NiQbs/s640/LD+20+years.jpg" width="640" /><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years at
the Scleroderma Unit,</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Royal Free
Hospital, UK. Nicola Whitehill.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSiYiPc271RsN9NYKyj_HtZGAozNMgOyghHNzhX2VR17ZrZP_DVHABXdGC8xdvWewcaUpOuXoWxbzfI7m17Tn3Rghp0bLqi4eHcp092I7UdrvGpRKs_BXhdgRAw8GW86Rjq_QtvldWdfA/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017 </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This week,</span> I am celebrating my 20<sup>th</sup> year
since first having dragged my ‘tin man body’ to the world leading expert
center, the Scleroderma Unit at The Royal Free Hospital in London, UK.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The previous year, at the time of my <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/scleroderma-raynauds-rare-disease.html" target="_blank"><span style="color: blue;">initial diagnosis</span></a> in September 1997, I was told
that I had a 15month prognosis, due to the aggressive attack, which the diffuse
form of the disease, was having on my body. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I was also told that there was no cure, with treatments
targeting symptom suppression in a ‘hope for the best’ kind of way. The
treatments used being steroids, chemotherapy and immunosuppressants. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">During the year following having first heard those
life changing words ‘You have scleroderma’, I took all of the <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/my-scleroderma-and-chemotherapy.html" target="_blank"><span style="color: blue;">standard treatments</span></a> used, in an attempt to
suppress the disease activity. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">By December 1998, I was in a very bad way. My body
was stiff, weak, in constant excruciating pain, and my skin was extremely
tight. </span><br />
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhi4KJ8FT2gStSeLL9WCJc149QiR94j1DcXN662yA5rPbk1y4HOCNbTe8Wck6Jv5njlCoVLY5c7mx4OHY9ITPhGS49DEmLkviq2bNXti2Wf2fYFUp5T9sAYQpkGepTLLmxDZVXTSpHmY/s400/2016+Day+4.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I was then started on a new medication regime which
included 3 iv Cyclophosphamide infusions, along with mycophenolate mofetil
(MMF) tablets. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thankfully, my name was removed from the <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/having-stem-cell-transplant-for.html" target="_blank"><span style="color: blue;">Stem Cell transplant</span></a> waiting list. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">A daily dose of 2g MMF for 5 years stabalised my
symptoms. This was stopped in March 2004, upon my achieving my personal career
goal of being a practising barrister. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am now 14 years chemotherapy / immunosuppressant
free. I take Bosentan for my <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">Raynaud’s</span></a> and control my GI symptoms with a
strict <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">Diet</span></a>. </span><br />
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<img border="0" data-original-height="732" data-original-width="774" height="302" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmmzr-5delC5vR0JjazKg-PyXXxT_gV-c8OKf9rk0AoOTgbDOTwpulN5_wtFHionbQZCAb-koetslyvU6FG7rbRWhRAQiB37BhBb12GlBOT9y3aRM9omBMRDphI5f3bcFfk5mBXig98uw/s320/13920914_1726461487571324_3242366640404967141_n.jpg" width="320" /> </div>
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<img border="0" data-original-height="727" data-original-width="802" height="290" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQGp24WsGq-dFx6L3Sfzc6teeGCP9Eve78-Rih3xR9rjrhkH0QteAm6NYG7ir3076-ZK9ifDwHcpQXVeQHqGOHViXcAhXxtuVwXtMnRclQfYYVlBMvjPlsAxTPWEtJrZ0B0-RRlvwzi9o/s320/13920645_1726461307571342_4274188491153442164_n.jpg" width="320" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In November 2016, I was delighted to hear Prof
Chris Denton advise me that my <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue;">skin is cured</span></a> from scleroderma. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="528" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ZuswSyFmIIiUZ8QSx5VDCl1jwi_i-7CDHPBfNh5Ma-dAy-aeU6Qw2QJ0p-Y3iJVK3AcBPUV44Fte6LauyuS0kmmOKgJYydhHVXC-R6gYnr9TkeCw5lXlT-RK4vmsh3zlXbAyPQ-5rgU/s400/NW+%252B+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="220" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Denton and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to Prof Chris Denton, my
other dream team members and ultimately, the NHS for <a href="http://blog.raynaudsscleroderma.co.uk/2018/09/happy-70th-birthday-to-nhs-thank-you.html" target="_blank"><span style="color: blue;">keeping me alive</span></a>. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s400/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Raynaud's world trailblazer, Dr Kevin Howell and I, Sept 2017</span></td></tr>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4qmGpTsIUAOjE-IB9somZ11OM_gTT3PPlJePO8O-M3DfT-oBY-PehH1sFtyPDXs4rAfRezg_-ykHEsEonBGm0yAo32abGxINwgNqtKoYOYlMhPsqY6HxA4M_QYc6dPxV-0gkIHSttDJk/s400/NW+%252B+Dr+Sykes.jpg" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Dr Hannah Sykes, Consultant Rheumatologist Southport Hospital, and I, Aug 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I know that I am a ‘lucky’ scleroderma
patient. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lucky, in that, I have minimal internal organ
damage. Lucky, in that, I continue to survive. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Albeit, my <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/scleroderma-raynauds-rare-disease-full.html" target="_blank"><span style="color: blue;">full time job</span></a> is looking after, and respecting my
symptoms. I am super mindful to avoid any situations which will exacerbate a
flare in my symptoms. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Prevention is better than cure, as, there is no cure, yet. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1063" data-original-width="666" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvB8WqiiPTyKO6aNWTwwUaoUaUOS3xsUs0GIFX3If1W1Ke6rz5T37nNk-38-4uunL0M4SmaXwQYGoI-xomrmJuCUTqmaA_b8uUuXfR5x1OAh8kCBib0VdB71p2LewzLuLktZfm00_W_fE/s400/NW+-+BEACH+2013.jpg" style="margin-left: auto; margin-right: auto;" width="250" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Hottest day of 2013 - I need to wear Ugg boots and gloves.</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Over the years, I have been privileged to have
become an advocate on the global stage for raising awareness of scleroderma,
Raynaud's and rare diseases as a whole. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Several highlights include: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">BBC <a href="https://www.youtube.com/watch?v=74-paj58uQw&t=192s" target="_blank"><span style="color: blue;">radio interview</span></a> 2013. I include my coping
details for living with such a life changing diagnosis. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Global feature, <a href="https://www.dailymail.co.uk/health/article-2389770/Raynauds-phenomenon-systemic-sclerosis-sufferer-Nicola-Whitehill-real-life-Tin-Man.html" target="_blank"><span style="color: blue;">The Daily Mail</span></a>, 2013. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.youtube.com/watch?v=-ZpnJTPO8fs" target="_blank"><span style="color: blue;">Presentation</span></a>
the <a href="https://www.rheumatology.org.uk/" target="_blank"><span style="color: blue;">British Society for Rheumatology</span></a> annual conference 2015. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">Presenting</span></a>
at the European Parliament, 2015. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease UK <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">parliamentary reception</span></a> 2016. </span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRzcIwmlprBeSrfcPPcvPmv8lM6Vk2G5RYmO9157ENMWl-dCa6q5PE6v8-6uP8aO3yuwZqp8iKaTEQvMzXhErfBDgsegYUDFt-3cAQ1w5JYUIaDp2E-6ot2d9AZN_yLI1QscZKus2C-ys/s320/Westminster-20160302-NWeskimo.jpg" width="320" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My <a href="https://sclerodermanews.com/category/blog/" target="_blank"><span style="color: blue;">Column</span></a> with Scleroderma News. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am honored to have become a <a href="https://www.nihr.ac.uk/news/nicola-whitehill-becoming-a-patient-research-ambassador-was-a-natural-next-step/8075" target="_blank"><span style="color: blue;">patient research ambassador</span></a> with the National
Institute for Health Research, earlier this year. <a href="https://www.youtube.com/watch?v=Di7IuS88bKI" target="_blank"><span style="color: blue;">video</span></a>. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">Medical Research</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">provides immense hope for </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld and #RaynaudsFreeWorld</span></div>
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Recently, I was appointed a Patient Public Voice on the NHS England CRG for <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a08/" target="_blank"><span style="color: blue;">Specialised Dermatology</span></a>. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am delighted about this new role. This is in
addition to my NHS England CRG <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a09/" target="_blank"><span style="color: blue;">Specialised Rheumatology</span></a> role, and my patient
expert <a href="https://www.ema.europa.eu/en/committees/committee-orphan-medicinal-products-comp" target="_blank"><span style="color: blue;">roles</span></a> with the <a href="https://www.ema.europa.eu/committes/working-parties-other-groups/chmp/scientific-advice-working-party" target="_blank"><span style="color: blue;">European Medicines Agency</span></a>. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">However, my '<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/03/living-dream-as-real-life-tin-man.html" target="_blank"><span style="color: blue;">tin man</span></a>' body, along with
chronic <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue;">fatigue</span></a> and <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue;">mobility</span></a> challenges, remain
constant sources of <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-job-today-is-to-simply-get-better.html" target="_blank"><span style="color: blue;">frustration</span></a>. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year in particular, has been quite challenging
for me with my scleroderma 'added extra' complications such as <a href="http://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">skin cancer</span></a>, <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">dental issues</span></a>, <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">calcinosis</span></a>
and index finger ulcer. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">During my global patient profile <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">campaigns</span></a> for Scleroderma Awareness Month in 2017
and 2018, <b>every patient</b> said that Raynaud’s and <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/raynauds-scleroderma-and-digital-ulcers.html" target="_blank"><span style="color: blue;">digital ulcers</span></a> were continual problems for them. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Other <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">unmet clinical needs</span></a> that patients have in
common include:</span></div>
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<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Calcinosis</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">Gum recession</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">Soft tissue and ulcers</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Telangiectasia</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Sclerodactyl hands</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Raynaud’s</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Gastrointestinal issues</span></a></span></li>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Overall, for optimal patient care, the following
are essential:</span></div>
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<li class="MsoNormal" style="line-height: normal; mso-list: l1 level1 lfo2; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l1 level1 lfo2; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Specialist centers</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l1 level1 lfo2; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l1 level1 lfo2; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
“<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream teams</span></a>" </span></li>
</ul>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk8dbYkGayrolSMluKay-AcC3Bc-LIg_kyaNmSkJoV9ylu9by-lR-Yv-3WamHbK7rf-RsZBv_L0EH9djkbBQ9ZYDa_B09x4-N8BlGOGgv2qMAFJQSXkl1TjKm6jTuodSRsmlPt0dttl6g/s400/2016+Day+30.jpg" width="400" /></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I'm living the dream, scleroderma style, with eternal gratitude to the world trailblazer
superhuman Prof Chris Denton, my medical dream team and my non medical dream
team. </span><br />
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<img border="0" data-original-height="720" data-original-width="1040" height="442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqiT9hqg-SohM57MI2hcpnd1iWQNbsxprGy-vGKLH60Pra-10je-mDArmjvF6ZKKm1l3Wu3ePJI_IXTzOcdRyCxxApyTPRX4T5UnUjLOARyUklLNA9G0VL8i-dGfDX1EZXm1xKsIthQk4/s640/2018+Symptoms+feels+like.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'Attitude is everything, so pick a good one, to
help you through this abyss'. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Follow: </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="color: blue;">Facebook</span></a>: Raynauds Scleroderma Awareness — Global
Patients </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Twitter: @SclerodermaRF and @RaynaudsRf</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Use the hashtags #SclerodermaFreeWorld and
#RaynaudsFreeWorld. </span><br />
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<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH7INQYP0id-SIrje4utw75zcbPqE6veOe8eMB7HCp-KTS6jeDpN7GeANkv82rPopCE3E74FIvm_1xOayKcaOlFEfDJpl03aZyMEmLLYDuA-gpLZAVetObXuiuHxgiETmjZhx01gXEkdQ/s640/SURF+2018+JG.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please <a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">donate</span></a> to help fund medical research at
the <a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue;">Scleroderma Unit</span></a> of the Royal Free Hospital,
London. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">One-hundred percent of raised funds will be used
for medical research purposes <b>only</b>. Thank you. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please consider <a href="https://www.royalfreecharity.org/give/legacy-gift" target="_blank"><span style="color: blue;">leaving a Gift</span></a> in your Will, for medical research
at the Scleroderma Unit. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> Thank You. </span><br />
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<img border="0" data-original-height="320" data-original-width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRYf8wa4D9mWOPdvQNNG4aM6VTEFj15LjFRA-Q0-auxdFOYRBeN4d45KQFlP4slpKQ_q1DWpBT4CODPgmKSPPnGZPbKCbhC9ZSXeoje27QxcZP001GdzNXGRZ5yq5RQO86PwrV__uT4xM/s1600/NW+Raynauds+twibbon.jpg" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">Living the dream, scleroderma style. </span></span></span><br />
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<img border="0" data-original-height="423" data-original-width="719" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUDiE9ItkkFR8Z0vFZEIefQYaM5Fdu5118faaozS4hkEMqLpTqtKk-WBLQqKNhKhYzq6J0ArxlOXMcfxAnFrgTY38TwDw-FjYdUxSgOQ_bdn7sdyU-V-B83YUZgpXdfmV11pAYIKqs1YU/s400/TwImg-20160809-232349.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An edited version of this article was published <a href="https://sclerodermanews.com/2018/12/05/scleroderma-royal-free-hospital-scleroderma-anniversary/" target="_blank"><span style="color: blue;">here</span></a>, in my <a href="https://sclerodermanews.com/category/blog/" target="_blank"><span style="color: blue;">Column</span></a> with Scleroderma News. </span>December <span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018. </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></div>
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<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<img border="0" data-original-height="972" data-original-width="715" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRM06draEoXLKj9NBtLV8HMAyqylt-dgZZJf1LhxBsjDRX7XM9TAKAkrDDczQdWKWTfOCGltb0y2_2Gxd7Bt-xnFAZiY0_2V26luHLSw4oLaZvvv-9hWfbcgT-rW9tEz4HSXAy1kvXyyg/s320/NW+NIHR+Rare+Disease+Day+20.jpg" width="235" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_MnBuZr_Can3fqsFFJoG_-2rQG2s_JB4jJiX1Nmyeop3Y-o96LwSMSsNg60Ct3rTnXvTjuRYOAXhphOknAMRPYVquB8ITsYXWGC6NaRACcdwQJjBD-s6eTaOc91FWbRkou_QTkn-7tU/s400/Westminster-20160302-NWeskimo.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQecKgdOZoiUN5MztR7PLe42WtewQ7eSWfhKvxjW5KNChodxF9bfcOa8bwRUUQM-BmNTNdQWOs4gD3Yy9ViPtabwmYacLWCB-Jb-IHa-JhyqEuzfnPgTP2NWpieQehH5nS8Yp_8XjlgC_f/s400/2019+Feels+like.jpg" width="276" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1440" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnUBiegKi3u4tV3zBbMtw7XhbXAopN07y3uVTE18SmWeI2W5bFQifUHF_qjKZKES19zUxUenwg3r914-PQ-fg847TsRHSrfMftFDbATOWXrduHYcmWt0-RdOssPIqFc0MwN-Qy1UYvkSJO/s640/Chat+mag+16.5.19.jpg" style="margin-left: auto; margin-right: auto;" width="354" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years at
the Scleroderma Unit,</span><div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Royal Free
Hospital, UK. Nicola Whitehill.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-80578322778066379002018-12-02T02:11:00.000-08:002020-03-01T06:46:07.246-08:00My Scleroderma and Chemotherapy Experience. Nicola Whitehill. Scleroderma, Raynaud's, Autoimmune Rare Disease. <div style="text-align: center;">
<img border="0" data-original-height="771" data-original-width="1100" height="448" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkrIb8Nv8i3rn7qVMyOnbpYvkFjMjJAvrXc_gkstFxDjYKOa_SFLUNevWf642K7RWW4fYsHKb0tA0w5FwC9jsHxbJrmALXhJwpwuipL3xVTmKWqcEIMJO1YBh5XLpjos26BqRZ2hhdi5Y/s640/LD+Chemotherapy.jpg" width="640" /><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My
Scleroderma and Chemotherapy Experience. Nicola Whitehill.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld #RaynaudsFreeWorld </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">At the start of December, I will be celebrating my
20<sup>th</sup> year since first dragging my tin man body, to the Scleroderma
Unit at The Royal Free Hospital in London, UK. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The
previous year, at the time of my <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/scleroderma-raynauds-rare-disease.html" target="_blank"><span style="color: blue;">initial diagnosis</span></a> in
September 1997, I was told that I had a 15month prognosis, due to the
aggressive attack, which the diffuse form of the disease, was having on my
body. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I was
also told that there was no cure, with treatments targeting symptom suppression
in a ‘hope for the best’ kind of way. The treatments used being steroids,
chemotherapy and immunosuppressants. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">During the
year following having first heard those life changing words ‘You have
scleroderma’, I took all of the standard treatments used, in an attempt to
suppress the disease activity. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">These
medications included </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Hydroxychloroquin, Tacrolimus,
Cyclosporin, Methotrexate, Prednisolone, Omeprazole, ALL pain killers,
Amitryptiline, Gabapentin, and Co-proxamol still remains my painkiller of
choice. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">By December 1998, I was in a very bad way. My body
was stiff, weak, in constant excruciating pain, and my skin was extremely tight. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I was then started on a new medication regime which
included 3 </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">iv Cyclophosphamide infusions, along with
mycophenolate mofetil (MMF) tablets. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thankfully, my name
was removed from the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/05/having-stem-cell-transplant-for.html" target="_blank"><span style="color: blue;">Stem Cell transplant</span></a> waiting
list. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">A daily dose of 2g
MMF for 5 years stabalised my symptoms. This was stopped in March 2004, upon my
achieving my personal career goal of being a practising barrister. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am now 14 years chemotherapy
/ immunosuppressant free. I take Bosentan for my <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">Raynaud’s</span></a> and control my GI
symptoms with a strict </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">Diet</span></a>. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My
body is still very weak from the effects of the chemotherapy. I am
super mindful that I have a weakened immune system in the process of
repair. I avoid being in large crowds to try and not get sneezed or
coughed on. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Any
small bug or virus could knock me out for months. I already feel as
though I have continual flu due to my scleroderma lethargy!</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thankfully,
I no longer have the continual nausea which accompanied my chemotherapy
experience, however, my GI symptoms are a continual daily demand. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My
muscles are still very weak, feeling as though I have sprinted around
the world and constant exhaustion upon the most basic of tasks eg.
having a bath. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My hair is slowly becoming thicker, but still comes out en masse, and more silver coloured hairs!</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In November
2016, I was delighted to hear Prof Chris Denton advise me that my <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue;">skin is cured</span></a> from
scleroderma.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am
eternally grateful to Prof Chris Denton and the NHS for <a href="http://blog.raynaudsscleroderma.co.uk/2018/09/happy-70th-birthday-to-nhs-thank-you.html" target="_blank"><span style="color: blue;">keeping me alive</span></a>. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As well
as my other dream team members. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Dr Howell, Raynaud's world trailblazer</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"><br /></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho9xuVfwD9_6e7Eo5UKzymIPQzq5rihBIntd0M3wmlOhk_y2qquM8DSYiSSs6cd7h1nZYo5auekMluDaTcag71kjxZzns8fhkydWRd3bETqLHiLIxrufA7HlN2EPg5JI2ac7dK5F8akMA/s320/NW+%252B+Dr+Sykes.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Dr Sykes, Consultant Rheumatologist, Southport hospital </span><br />
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<img border="0" data-original-height="720" data-original-width="1040" height="442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqiT9hqg-SohM57MI2hcpnd1iWQNbsxprGy-vGKLH60Pra-10je-mDArmjvF6ZKKm1l3Wu3ePJI_IXTzOcdRyCxxApyTPRX4T5UnUjLOARyUklLNA9G0VL8i-dGfDX1EZXm1xKsIthQk4/s640/2018+Symptoms+feels+like.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My '<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/03/living-dream-as-real-life-tin-man.html" target="_blank"><span style="color: blue;">tin man</span></a>' body, along with
chronic <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue;">fatigue</span></a> and <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue;">mobility</span></a> challenges, remain
constant sources of <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-job-today-is-to-simply-get-better.html" target="_blank"><span style="color: blue;">frustration</span></a>, making a <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/scleroderma-raynauds-rare-disease-full.html" target="_blank"><span style="color: blue;">full time job</span></a>, with
managing my symptoms. </span><br />
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<img border="0" data-original-height="918" data-original-width="1439" height="204" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhlP22NEElB5E84kkxGZ2VZwBiQCYMwaUus_Y7LE7veFOUSYxlXddMgGkpwzFfZlWdHJNiPStuS0_Wcr1GH7zoSxOd6wfvjBftyNVuDWsVj0iVHquXeZYtEeyQrnYgJ5ngfbcRhspb354/s320/gum+recesssion+9.9.18+after.JPG" width="320" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year in particular, has been quite challenging for me with my scleroderma 'added extra' complications such as skin cancer, <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">dental issues</span></a>, calcinosis and index finger ulcer. </span></div>
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<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">I know that I am a ‘lucky’
scleroderma patient. </span><br />
<br />
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Lucky, in that, I have minimal internal organ damage. Lucky,
in that, I continue to survive. </span><br />
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<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Albeit, my <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/scleroderma-raynauds-rare-disease-full.html" target="_blank"><span style="color: blue;">full time job</span></a> is looking after, and respecting my symptoms. </span><br />
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<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGCkgQ24easdCukEOGaKarxZ9ACdHxXXNPXSJcyo7hP0KtTYwE6n-Xae_GyIegN63VTu06lShwemvSKwdFaKekxbeMLnQ5vHdWkXblohrk3cU5P6UZMfAf5wdFanG3ghEX55U3Yna5XtU/s640/NW+2018+Awareness.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">During the
course of my global patient profiles <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">campaign</span></a> for Scleroderma
Awareness Month 2017 and 2018, <b style="mso-bidi-font-weight: normal;">every
patient</b> detailed how Raynaud’s and <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/raynauds-scleroderma-and-digital-ulcers.html" target="_blank"><span style="color: blue;">digital ulcers</span></a> were a
continual problem to them. <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/global-patient-profiles-index-june.html" target="_blank"><span style="color: blue;">INDEX</span></a> </span><br />
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/l_u1ZUo83YM/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/l_u1ZUo83YM?feature=player_embedded" width="320"></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Other <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">unmet clinical needs</span></a>, which
patients have in common include: </span><br />
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/qSVpjk1irJc/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/qSVpjk1irJc?feature=player_embedded" width="320"></iframe></div>
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<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Calcinosis</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">Gum recession</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">Soft tissue and ulcers</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Telangiectasia</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Sclerodactyl hands</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Raynaud’s</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Gastrointestinal issues</span></a></span></li>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am honored to be a
<a href="https://www.nihr.ac.uk/news/nicola-whitehill-becoming-a-patient-research-ambassador-was-a-natural-next-step/8075" target="_blank"><span style="color: blue;">patient research ambassador</span></a>
with the National Institute for Health Research. <a href="https://www.youtube.com/watch?v=Di7IuS88bKI" target="_blank"><span style="color: blue;">video</span></a>. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Di7IuS88bKI/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/Di7IuS88bKI?feature=player_embedded" width="320"></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">Medical Research</span></a> provides immense hope for #SclerodermaFreeWorld. </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
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</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
<br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
</div>
<div style="text-align: center;">
<div style="text-align: center;">
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">(expert specialist as the clinical lead).</span></span> </span></span></span></span></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk8dbYkGayrolSMluKay-AcC3Bc-LIg_kyaNmSkJoV9ylu9by-lR-Yv-3WamHbK7rf-RsZBv_L0EH9djkbBQ9ZYDa_B09x4-N8BlGOGgv2qMAFJQSXkl1TjKm6jTuodSRsmlPt0dttl6g/s400/2016+Day+30.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In the meantime, I
continue to remind myself that '<a href="http://blog.raynaudsscleroderma.co.uk/2017/04/my-job-today-is-to-simply-get-better.html" target="_blank"><span style="color: blue;">My Job Today is to Simply Get Better</span></a>',
with hope, and my canine diva dream team, as my constant companions. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October was <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/raynauds-awareness-month-october-2018.html" target="_blank"><span style="color: blue;">Raynaud's Awareness Month</span></a> and my</span></span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/raynauds-scleroderma-50-shades-of-blue.html" target="_blank"><span style="color: blue;">50 shades of blue</span></a> 'party
trick', time of year. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span>
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<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGjTrx40FNp9a3v8m7KIPCsWZn4EFOAYyb0GO2mwisq6VwWAuOxiNFXWgv7udTbfJngU5DL4Me20n_bQYi_h43dxZRB8QzgimNXshMxgdCdYebtjUzjIE4HfJKuxLa2rzvuCzLzYhd3QQ/s400/2019+RaynaudsRF+Left+Hand.jpg" width="400" /></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Recently, I was appointed a Patient Public Voice on the NHS England CRG for <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a08/" target="_blank"><span style="color: blue;">Specialised Dermatology</span></a>. </span></span></span></span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am delighted about this role, and I very much hope to be a valued voice. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This is in addition to my NHS England CRG <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a09/" target="_blank"><span style="color: blue;">Specialised Rheumatology</span></a> role, and my <a href="https://www.ema.europa.eu/en/committees/committee-orphan-medicinal-products-comp" target="_blank"><span style="color: blue;">roles</span></a> with the <a href="https://www.ema.europa.eu/committes/working-parties-other-groups/chmp/scientific-advice-working-party" target="_blank"><span style="color: blue;">European Medicines Agency</span></a>. </span></span></span></span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Facebook Page: </span></span><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="mso-bookmark: _Hlk516925027;"><span style="color: blue; font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynauds SclerodermaAwareness Global Patients</span></span></a><span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
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<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span></span><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="mso-bookmark: _Hlk516925027;"><span style="color: blue; font-family: "arial" , sans-serif; font-size: 12.0pt;">DONATE</span></span></a><span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help fund medical research
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<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">November 2018. </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">Living the dream, scleroderma style. </span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An edited version of this article was published <a href="https://sclerodermanews.com/2018/11/21/scleroderma-chemotherapy-treatments-experience-look-back/" target="_blank"><span style="color: blue;">here</span></a>, in my <a href="https://sclerodermanews.com/category/blog/" target="_blank"><span style="color: blue;">Column</span></a> with Scleroderma News. </span>November <span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018. </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<img border="0" data-original-height="972" data-original-width="715" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRM06draEoXLKj9NBtLV8HMAyqylt-dgZZJf1LhxBsjDRX7XM9TAKAkrDDczQdWKWTfOCGltb0y2_2Gxd7Bt-xnFAZiY0_2V26luHLSw4oLaZvvv-9hWfbcgT-rW9tEz4HSXAy1kvXyyg/s320/NW+NIHR+Rare+Disease+Day+20.jpg" width="235" /> </div>
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<img border="0" data-original-height="1048" data-original-width="716" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGOHhu60AyfbVzij00CJ21nGrOiSUatbpTEBQImhIBc1ivpUOE1HN4E5ZAF0G4cg9ru2HOwD0k3Uj_34IozVs-fkOPIH-B7nE3009b8oYhs67I9r74gdgT-OKlZK7ElVajuTTQCPUQHt0/s320/NW+NIHR+North+Thames+Rare+Disease+Day+20.jpg" width="218" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_MnBuZr_Can3fqsFFJoG_-2rQG2s_JB4jJiX1Nmyeop3Y-o96LwSMSsNg60Ct3rTnXvTjuRYOAXhphOknAMRPYVquB8ITsYXWGC6NaRACcdwQJjBD-s6eTaOc91FWbRkou_QTkn-7tU/s400/Westminster-20160302-NWeskimo.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><div class="MsoNoSpacing" style="text-align: center;">
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1440" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnUBiegKi3u4tV3zBbMtw7XhbXAopN07y3uVTE18SmWeI2W5bFQifUHF_qjKZKES19zUxUenwg3r914-PQ-fg847TsRHSrfMftFDbATOWXrduHYcmWt0-RdOssPIqFc0MwN-Qy1UYvkSJO/s640/Chat+mag+16.5.19.jpg" style="margin-left: auto; margin-right: auto;" width="354" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
<br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<br /><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/LwEMpz77N_I/0.jpg" src="https://www.youtube.com/embed/LwEMpz77N_I?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">For latest updates follow / subscribe: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">@SclerodermaRF </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">@RaynaudsRf </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">research</span></a> at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit,The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
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Scleroderma and Chemotherapy Experience. Nicola Whitehill.</span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease. </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a></span></span></span></span></div>
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<br />Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-36045170032025009752018-11-26T08:45:00.001-08:002020-02-29T11:43:20.412-08:00Scleroderma Skin Cancer and Other Skin Complications. Raynaud's, Autoimmune, Rare Disease.<div style="text-align: center;">
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<span style="font-family: "arial" , sans-serif;">Scleroderma
Skin Cancer and Other Skin Complications </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The skin is the largest organ in the body. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It is
affected in <a href="http://raynaudsscleroderma.blogspot.co.uk/2016/06/day-1-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">most scleroderma</span></a> patients. </span><br />
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE8uZobUzZU_g0kdvNU9Q-PBvr_7GCg9wa1K8-A-c5KqXwsV-6CV8Yz4THAF-RJWCX1mjKGLj-6PeHUrOb_MdW4OFe3egSwOLCjIEIWbeD5Hi-BIUNI5AjOojPfCuQa13aw3yaOyLt9c8/s400/2016+Day+1.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">At the time of my diffuse scleroderma (dcSSc) diagnosis
in 1997, I <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/scleroderma-raynauds-rare-disease.html" target="_blank"><span style="color: blue;">presented</span></a> with extremely <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/skin-involvement-in-scleroderma.html" target="_blank"><span style="color: blue;">tight skin</span></a> across my chest, arms, hands,
face, legs … all over my body. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My hands and fingers were puffy with tight,
itchy, shiny skin and painful joints. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I was unable to make a fist and could not
remove bottle tops, the lids of jam jars, or the like, and had other
symptoms (joint pain, gastro-intestinal, pain, lethargy, fatigue...</span> <span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2016/06/day-4-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">Day 4</span></a> Scleroderma Awareness 2016). </span><br />
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhi4KJ8FT2gStSeLL9WCJc149QiR94j1DcXN662yA5rPbk1y4HOCNbTe8Wck6Jv5njlCoVLY5c7mx4OHY9ITPhGS49DEmLkviq2bNXti2Wf2fYFUp5T9sAYQpkGepTLLmxDZVXTSpHmY/s400/2016+Day+4.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Surprisingly, my <a href="http://blog.raynaudsscleroderma.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">Raynaud's</span></a> symptoms developed later. </span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWmuMtktLgZuVsyvR8ylSorLZvDa1AxeYgUpdFwyuSq8ysIjg2_NiTWTqZW1AEcgEK8wcI8_znWQeeXR-xpuZ8ie3up9SUFeDiduJkzPLqrVjr5lLhO2mBoI4oqGvu-Mfc5kZPFZ04zC0/s320/NW+raynauds+left+hand.jpg" width="320" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">I was
given a 15 month prognosis at the time of my <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/scleroderma-raynauds-rare-disease.html" target="_blank"><span style="color: blue;">initial diagnosis</span></a>, due to the aggressive progression which the disease was having on my body. </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">However, further to 7 years of </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">chemotherapy and immunosuppressants, (I am now 14 years cytotoxic drug free), </span>I still remain in a state of elation, having
been told by <a href="https://www.royalfree.nhs.uk/services/staff-a-z/professor-christopher-denton/" target="_blank"><span style="color: blue;">Prof Chris Denton</span></a> that ‘<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue;">my skin is cured from scleroderma</span></a>’, in November 2016. </span></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="528" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ZuswSyFmIIiUZ8QSx5VDCl1jwi_i-7CDHPBfNh5Ma-dAy-aeU6Qw2QJ0p-Y3iJVK3AcBPUV44Fte6LauyuS0kmmOKgJYydhHVXC-R6gYnr9TkeCw5lXlT-RK4vmsh3zlXbAyPQ-5rgU/s400/NW+%252B+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="220" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Global Scleroderma Trailblazer Prof Denton and I, Sept 2017.</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have a daily symptom management routine
that includes bathing and moisturising my skin. </span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For the bath, I use liquid
petroleum (Oilatum Plus) and then, after towel drying, I use Hydromol emollient
cream all over my body. </span><br />
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgirAPzP3EzD2MTPrIubgL0sEkMA0jxOUogrkhDhZk7W4xa-PTvvqHzOs3_Y6JacHyGYTwcKU9_eiVSKjEW5uNPtAoyrDDEl3FIzwjSxqibjU6p1dHo12eVs7Pq4tnBYbitW0Ldl1SlFH8/s400/Tin+Man+-+Daily+Mail+2013.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Over the course of the last 5 years or so, I have </span></span>experienced several <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/skin-cancer-in-scleroderma-raynauds.html" target="_blank"><span style="color: blue;">skin complications</span></a> which remain on-going. </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Most recently, I attended a follow up of my appointment for my 'Bowen's patch' saga, which reignited at the start of 2018.<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"> ‘<a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/the-pandoras-box-of-rare-autoimmune.html" target="_blank"><span style="color: blue;">The Pandora’s Box of Scleroderma</span></a>’. </span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></span></span></div>
<div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">At that initial referral
appointment in January, <a href="http://www.drbassas.com/en/" target="_blank"><span style="color: blue;">Dr Bassas</span></a>, was most concerned to rule out a potential melanoma, advising me that
this could kill me. </span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"> </span><br />
<br />
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">I refused to undergo a <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/skin-tests-in-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue;">skin biopsy</span></a> due to the time of year,
as winter is my <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-raynauds-and-scleroderma-patients.html" target="_blank"><span style="color: blue;">nemesis</span></a>
season. </span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"> </span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"> </span></span></span></span></div>
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<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">I commenced daily
application of Effudix cream, a chemotherapy, until a week before my follow up appointment,
in March. </span><br />
<br />
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">The Effudix cream had caused my skin to
inflame and break, bringing pain, and causing discomfort.</span><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"> However, these symptoms
subsided after a few weeks. </span><br />
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">On the day of my follow up appointment in March, the skin
still remained discoloured, but was now smooth. </span><br />
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"> </span></div>
</div>
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<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><a href="https://finder.bupa.co.uk/Consultant/view/32460/dr_anthony_downs" target="_blank"><span style="color: blue;">Dr Anthony Downs</span></a> examined the discoloured skin area on my knee and told me
‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/your-skin-cancer-has-cleared.html" target="_blank"><span style="color: blue;">Your skin cancer has cleared</span></a>’. </span></span><br />
<br />
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">I was stunned and overjoyed, and what’s more – <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/skin-tests-in-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue;">no biopsy</span></a>! </span> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"> </span>
</span></span></span></div>
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">I then showed Dr Downs other skin ‘spots’ for him to confirm that
these were sun spots, as well as, <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/skin-cancer-in-scleroderma-raynauds.html" target="_blank"><span style="color: blue;"><span style="background: white;">Actinic Keratosis</span></span></a><span style="background: white; color: #222222;">,</span> on my forehead. </span><br />
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="453" data-original-width="604" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik-szlYcoHMVyuFYjPV546UBJNMeZiqCl5IKW2e_GdqlERNsHx-g6k-WRNxbVVNF7yEOgkfQstVSswzVAVeqHOg4e_T9i_dgnCLHk09ul47BV9VNjWGXmweAP5Dxlp6yBXvSGddVJwp1E/s320/14448852_10154643018942664_7336492759443856042_n.jpg" style="margin-left: auto; margin-right: auto;" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Post biopsy Sept 2016</span></td></tr>
</tbody></table>
</div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Dr Downs reminded me that
the medications used to treat scleroderma, carry a potential increased risk of
developing skin cancer combined with sun damage. </span><br />
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"> </span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">During my recent follow up appointment, <a href="https://www.spirehealthcare.com/consultant-profiles/dr-aamir-memon-c4086484/" target="_blank"><span style="color: blue;">Dr Aamir Meman</span></a>, was concerned that the 'Bowen's patch' skin area was now presenting as a basal cell carcinoma. </span><br />
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">As, the skin is now showing pinky brown patches. I have some new cream to try - Imiquimod, another chemotherapy cream. </span></div>
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<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">I know that I am a ‘lucky’
scleroderma patient. </span><br />
<br />
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Lucky, in that, I have minimal internal organ damage. Lucky,
in that, I continue to survive. </span><br />
<br />
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<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Albeit, my <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/scleroderma-raynauds-rare-disease-full.html" target="_blank"><span style="color: blue;">full time job</span></a> is looking after, and respecting my symptoms. </span><br />
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"> </span><br />
<span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span>
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<img border="0" data-original-height="720" data-original-width="960" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGCkgQ24easdCukEOGaKarxZ9ACdHxXXNPXSJcyo7hP0KtTYwE6n-Xae_GyIegN63VTu06lShwemvSKwdFaKekxbeMLnQ5vHdWkXblohrk3cU5P6UZMfAf5wdFanG3ghEX55U3Yna5XtU/s400/NW+2018+Awareness.jpg" width="400" /> </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
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<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">During the
course of my global patient profiles <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">campaign</span></a> for Scleroderma
Awareness Month 2017 and 2018, <b style="mso-bidi-font-weight: normal;">every
patient</b> detailed how Raynaud’s and <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/raynauds-scleroderma-and-digital-ulcers.html" target="_blank"><span style="color: blue;">digital ulcers</span></a> were a
continual problem to them. <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/global-patient-profiles-index-june.html" target="_blank"><span style="color: blue;">INDEX</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/l_u1ZUo83YM/0.jpg" src="https://www.youtube.com/embed/l_u1ZUo83YM?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Other <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">unmet clinical needs</span></a>, which
patients have in common include: </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/qSVpjk1irJc/0.jpg" src="https://www.youtube.com/embed/qSVpjk1irJc?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<ul type="disc">
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Calcinosis</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">Gum recession</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">Soft tissue and ulcers</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Telangiectasia</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Sclerodactyl hands</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Raynaud’s</span></a></span></li>
<li class="MsoNormal" style="line-height: normal; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt; text-align: justify;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">Gastrointestinal issues</span></a></span></li>
</ul>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am honored to be a
<a href="https://www.nihr.ac.uk/news/nicola-whitehill-becoming-a-patient-research-ambassador-was-a-natural-next-step/8075" target="_blank"><span style="color: blue;">patient research ambassador</span></a>
with the National Institute for Health Research. <a href="https://www.youtube.com/watch?v=Di7IuS88bKI" target="_blank"><span style="color: blue;">video</span></a>. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Di7IuS88bKI/0.jpg" src="https://www.youtube.com/embed/Di7IuS88bKI?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">Medical Research</span></a> provides immense hope for #SclerodermaFreeWorld. </span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"> </span> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Overall, for optimum
patient care, 3 hallmarks preside: </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a><span style="mso-spacerun: yes;"> </span></span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a><span style="mso-spacerun: yes;"> </span></span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a><span style="mso-spacerun: yes;"> </span></span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">medical</span><span style="color: blue; font-family: "arial" , sans-serif; font-size: 12.0pt;"> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’</span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">(expert specialist as the clinical lead). </span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In the meantime, I
continue to remind myself that '<a href="http://blog.raynaudsscleroderma.co.uk/2017/04/my-job-today-is-to-simply-get-better.html" target="_blank"><span style="color: blue;">My Job Today is to Simply Get Better</span></a>',
with hope, and my canine diva dream team, as my constant companions. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October was <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/raynauds-awareness-month-october-2018.html" target="_blank"><span style="color: blue;">Raynaud's Awareness Month</span></a> and my</span></span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/raynauds-scleroderma-50-shades-of-blue.html" target="_blank"><span style="color: blue;">50 shades of blue</span></a> 'party
trick', time of year. </span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Recently, I was appointed a Patient Public Voice on the NHS England CRG for <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a08/" target="_blank"><span style="color: blue;">Specialised Dermatology</span></a>. </span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am delighted about this role, and very much hope to be a valued voice. </span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This is in addition to my NHS England CRG <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a09/" target="_blank"><span style="color: blue;">Specialised Rheumatology</span></a> role, and my <a href="https://www.ema.europa.eu/en/committees/committee-orphan-medicinal-products-comp" target="_blank"><span style="color: blue;">roles</span></a> with the <a href="https://www.ema.europa.eu/committes/working-parties-other-groups/chmp/scientific-advice-working-party" target="_blank"><span style="color: blue;">European Medicines Agency</span></a>. </span></span></span></span></span> </span></span></span></span> </span></div>
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<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld
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<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span></span><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="mso-bookmark: _Hlk516925027;"><span style="color: blue; font-family: "arial" , sans-serif; font-size: 12.0pt;">DONATE</span></span></a><span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help fund medical research
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<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
research purposes <b>only</b>. Thank You. </span></span><br />
<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October 2018. </span></span><br />
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<img border="0" data-original-height="320" data-original-width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRYf8wa4D9mWOPdvQNNG4aM6VTEFj15LjFRA-Q0-auxdFOYRBeN4d45KQFlP4slpKQ_q1DWpBT4CODPgmKSPPnGZPbKCbhC9ZSXeoje27QxcZP001GdzNXGRZ5yq5RQO86PwrV__uT4xM/s1600/NW+Raynauds+twibbon.jpg" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">Living the dream, scleroderma style. </span><br />
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<img border="0" data-original-height="423" data-original-width="719" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUDiE9ItkkFR8Z0vFZEIefQYaM5Fdu5118faaozS4hkEMqLpTqtKk-WBLQqKNhKhYzq6J0ArxlOXMcfxAnFrgTY38TwDw-FjYdUxSgOQ_bdn7sdyU-V-B83YUZgpXdfmV11pAYIKqs1YU/s400/TwImg-20160809-232349.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An edited version of this article was published <a href="https://sclerodermanews.com/2018/11/07/scleroderma-causes-skin-cancer-dermatology-complications/" target="_blank"><span style="color: blue;">here</span></a>, in my <a href="https://sclerodermanews.com/category/blog/" target="_blank"><span style="color: blue;">Column</span></a> with Scleroderma News. </span>November <span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018. </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<img border="0" data-original-height="972" data-original-width="715" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRM06draEoXLKj9NBtLV8HMAyqylt-dgZZJf1LhxBsjDRX7XM9TAKAkrDDczQdWKWTfOCGltb0y2_2Gxd7Bt-xnFAZiY0_2V26luHLSw4oLaZvvv-9hWfbcgT-rW9tEz4HSXAy1kvXyyg/s320/NW+NIHR+Rare+Disease+Day+20.jpg" width="235" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_MnBuZr_Can3fqsFFJoG_-2rQG2s_JB4jJiX1Nmyeop3Y-o96LwSMSsNg60Ct3rTnXvTjuRYOAXhphOknAMRPYVquB8ITsYXWGC6NaRACcdwQJjBD-s6eTaOc91FWbRkou_QTkn-7tU/s400/Westminster-20160302-NWeskimo.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQecKgdOZoiUN5MztR7PLe42WtewQ7eSWfhKvxjW5KNChodxF9bfcOa8bwRUUQM-BmNTNdQWOs4gD3Yy9ViPtabwmYacLWCB-Jb-IHa-JhyqEuzfnPgTP2NWpieQehH5nS8Yp_8XjlgC_f/s400/2019+Feels+like.jpg" width="276" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: 5.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 5.0pt; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ZuswSyFmIIiUZ8QSx5VDCl1jwi_i-7CDHPBfNh5Ma-dAy-aeU6Qw2QJ0p-Y3iJVK3AcBPUV44Fte6LauyuS0kmmOKgJYydhHVXC-R6gYnr9TkeCw5lXlT-RK4vmsh3zlXbAyPQ-5rgU/s320/NW+%252B+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="176" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlF_fkeNVYEdn5oyo9ehKwMzPQJqejKGyDfK8XNiR31BdTfKqHdL6CgKxo2vu6dOyTWvDJ8UhcnHdsBI6iaEGKhnmopVL_oyfq5HYPIElfFu4Othx5mcoLUuxuU09QxwVyJVoW9on9qVnA/s320/NW+Prof+D+19.6.19.jpg" style="margin-left: auto; margin-right: auto;" width="176" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
<br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><br /></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<br /><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/LwEMpz77N_I/0.jpg" src="https://www.youtube.com/embed/LwEMpz77N_I?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif;">Scleroderma
Skin Cancer and Other Skin Complications </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-35469207809663924182018-11-19T00:12:00.001-08:002020-03-01T07:14:37.833-08:00The Scleroderma Tooth Fairy. Scleroderma, Raynaud's, Autoimmune Rare Disease. Nicola Whitehill.<div class="MsoNoSpacing" style="text-align: center;">
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<img border="0" data-original-height="771" data-original-width="1100" height="448" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8mQMIZomtIOCwAGYN0SdUPwHZyS-DQBBDbvou_84qftkAxACLlGtKQfBgmmL5jN72648dBFNrBbD2fI97flrMODQfdeqGcp_Ej0pock-CLkFCwQ3_MTEDk4YclKTNHMEBTh7VgmNTZVU/s640/The+Scleroderma+Tooth+Fairy.jpg" width="640" /></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Scleroderma Tooth Fairy. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Over here in the
northern hemisphere the summer holidays have finished. As scleroderma patients,
we know all too well, that we do not have a holiday from this diagnosis. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">More often than not,
the management of the multi complex symptoms makes for a <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/scleroderma-raynauds-rare-disease-full.html" target="_blank"><span style="color: blue;">full time job</span></a>. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have
previously, likened my experience to being an <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-raynauds-scleroderma-rare-disease.html" target="_blank"><span style="color: blue;">Olympic athlete</span></a>. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">However, this year,
I feel that my experience has been more like a circus performer, by way of
juggling the many demands which my disease brings. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although the warmer
temperature during the summer months, '<a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-magic-of-summer-when-living-with.html" target="_blank"><span style="color: blue;">The Magic of Summer</span></a>', is
most welcome, a different set of symptoms present, with <a href="http://blog.raynaudsscleroderma.co.uk/2016/06/day-25-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">pain</span></a>, <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue;">fatigue</span></a> and '<a href="http://blog.raynaudsscleroderma.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue;">tin man</span></a>' being a
constant. </span><br />
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<img border="0" data-original-height="720" data-original-width="1040" height="442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqiT9hqg-SohM57MI2hcpnd1iWQNbsxprGy-vGKLH60Pra-10je-mDArmjvF6ZKKm1l3Wu3ePJI_IXTzOcdRyCxxApyTPRX4T5UnUjLOARyUklLNA9G0VL8i-dGfDX1EZXm1xKsIthQk4/s640/2018+Symptoms+feels+like.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The <a href="http://blog.raynaudsscleroderma.co.uk/2017/10/seasonal-change-summer-to-autumn.html" target="_blank"><span style="color: blue;">seasonal change</span></a> from summer
to autumn always causes me to have a heavy heart, even though I try to not let
this seasonal reality sadden me. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I know that I will have to prepare for
battening down my hatches, and a return to my eskimo-style outfits. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, I have
been very fragile, having starting the year with shingles. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">At the start of
spring 2018, I wrote about the <a href="http://blog.raynaudsscleroderma.co.uk/2018/02/the-pandoras-box-of-rare-autoimmune.html" target="_blank"><span style="color: blue;">Pandora's Box</span></a> and my skin
cancer experience. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I also wrote about my ongoing dental issues due to my
diagnosis, '<a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">If we only had more research</span></a>'.
</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In this article I
will be focussing on the dental and oral implications which this diagnosis can
bring, and in particular, my recent dental visits. <span style="background: white;"> </span></span></div>
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<span style="background: white; font-family: "arial" , sans-serif; font-size: 12.0pt;">Tightening
of the skin on the face, combined with s<span style="color: #1d2129;">hrinkage to
the soft tissue around the mouth and lips, causes thinning to the lips, </span>with
deep lines around the mouth<span style="color: #1d2129;">. </span></span></div>
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<span style="background: white; font-family: "arial" , sans-serif; font-size: 12.0pt;">This
change in facial shape and appearance can cause multiple complications.
Including, tooth loss due to the recession of the gums and tooth root
reabsorption.<br />
<br />
A dry mouth symptom can lead to mouth infections and tooth abscess.<span style="color: #1d2129;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mouth opening can be
very difficult, making a dentist appointment timely and requiring a patient,
understanding, scleroderma informed dentist. </span></div>
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<span style="background: white; color: #1d2129; font-family: "arial" , sans-serif; font-size: 12.0pt;">I am extremely grateful to my dentist, <a href="https://www.oasisdentalcare.co.uk/practices/oasis-dental-care-churchtown/about-us/our-people/" target="_blank"><span style="color: blue;">Dr Andrew Booth</span></a>, and dental
hygienist, <a href="https://www.oasisdentalcare.co.uk/practices/oasis-dental-care-churchtown/about-us/our-people/" target="_blank"><span style="color: blue;">Louise Doran</span></a><span style="mso-spacerun: yes;"> </span>for their continued patience and expertise.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I see Louise every three
months, combined with appointments with Andrew, every six months. However, this
schedule is often interrupted by way of an emergency appointment due to a flare
caused by an infection. </span><br />
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYCJ2IMbwYcNwi3ELg_FtMm3omwxinbUEQrC2UKkPCdGg9Di4_DQ-mSRa7RRgm11laYTD00deoOjxlHKrlnwcfnHWU1S6c978wPtChJRueMxLcn4l7ZDSTnCKQOOWAgYMhA3fyHd5DMJQ/s400/2016+Day+28.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br />
<span style="background: white; color: #1d2129;"><a href="http://blog.raynaudsscleroderma.co.uk/2016/06/day-28-scleroderma-awareness-month-soft.html" target="_blank"><span style="color: blue;">Day 28</span></a> Scleroderma
Awareness Month 2016. </span></span></div>
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<span style="background: white; color: #1d2129; font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2016/06/day-18-scleroderma-awareness-month-skin.html" target="_blank"><span style="color: blue;">Day 18</span></a> Scleroderma
Awareness Month 2016. </span><br />
<span style="background: white; color: #1d2129; font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="background: white; color: #1d2129; font-family: "arial" , sans-serif; font-size: 12.0pt;">I have difficulty holding a tooth brush due to the physical limitation
in my hands and fingers. </span></div>
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<span style="background: white; color: #1d2129; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="background: white; color: #1d2129; font-family: "arial" , sans-serif; font-size: 12.0pt;">Over the years, I have developed gum recession. </span><br />
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<span style="background: white; color: #1d2129; font-family: "arial" , sans-serif; font-size: 12.0pt;">This is excruciatingly
painful, causing dental involvement requiring tooth extractions and increased
susceptibility to infection, aided by a continual dry mouth.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="background: white; color: #1d2129; font-family: "arial" , sans-serif; font-size: 12.0pt;">I am devastated to have had 3 tooth extractions due to scleroderma. </span><br />
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<span style="background: white; color: #1d2129; font-family: "arial" , sans-serif; font-size: 12.0pt;">However, on the bigger picture scale, I know that this is a small irrelevance,
compared to some of the organ devastation which other patients experience. </span><br />
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<span style="background: white; color: #1d2129; font-family: "arial" , sans-serif; font-size: 12.0pt;">Throughout this year, my gum recession has deteriorated. Last week,
during my appointment with Louise, I nearly passed out. I had pain shooting
across my face, along to my ear, caused by the exposure of my teeth roots, due
to gum recession. </span><br />
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<span style="background: white; color: #1d2129; font-family: "arial" , sans-serif; font-size: 12.0pt;">After a few days recovery, Andrew, very kindly applied a sealant over
the exposed part of the teeth. So far, this has proved successful and I am
elated to be ‘face ache free’, caused by gum recession! </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am extremely
careful with the foods which I eat, choosing softer, easier to chew foods, as my
best option. The scleroderma tooth fairy is not having my two front teeth, or any more of my teeth!!
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<span style="background: white; color: #1d2129; font-family: "arial" , sans-serif; font-size: 12.0pt;">This very important symptom of scleroderma, dental / mouth involvement,
is most definitely a current <b>unmet clinical need</b>. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Several of the
patients included within my Scleroderma Awareness Month 2017 and 2018 <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">campaigns</span></a>, reported dental / gum symptoms, as one
of their many current health challenges. <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/global-patient-profiles-index-june.html" target="_blank"><span style="color: blue;">INDEX</span></a>. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Other <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">unmet clinical needs</span></a>, which patients have in common include: </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">CALCINOSIS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GUM RECESSION, TOOTH
EXTRACTS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SOFT TISSUE, ULCERS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">TELANGIECTASIA,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SCLERODACTYL HANDS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">INVISIBLE
DISABILITY, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/invisible-disability-unmet-clinical.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">RAYNAUD'S, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GASTROINTESTINAL,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although these unmet needs are not immediately
life threatening, they cause havoc with the day to day quality of each patient’s
life. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">investment</span></a> in medical research will most certainly
<b>improve</b> the currently ‘soul destroying’ reality, these unmet clinical needs bring.
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am honored to be a
<a href="https://www.nihr.ac.uk/news/nicola-whitehill-becoming-a-patient-research-ambassador-was-a-natural-next-step/8075" target="_blank"><span style="color: blue;">patient research ambassador</span></a> with the National Institute for Health Research. <a href="https://www.youtube.com/watch?v=Di7IuS88bKI" target="_blank"><span style="color: blue;">video</span></a>. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
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</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Where, investment in medical research is
crucial, to improve the day to day reality, as well as, the long term outlook
for the entire global scleroderma community. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In the meantime, I
continue to remind myself that '<a href="http://blog.raynaudsscleroderma.co.uk/2017/04/my-job-today-is-to-simply-get-better.html" target="_blank"><span style="color: blue;">My Job Today is to Simply Get Better</span></a>', with the scleroderma tooth fairy away, on holiday. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Follow: </span><br />
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<u><span style="color: blue; font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="color: blue;">Facebook Page</span></a></span></u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">: Raynauds
Scleroderma Awareness Global Patients </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Twitter, Instagram, Blogger, You Tube:
@SclerodermaRF @RaynaudsRf </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld
#RaynaudsFreeWorld </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please <u><span style="color: blue;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">DONATE</span></a></span></u> to help fund medical research
at <u><span style="color: blue;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue;">The Scleroderma Unit, The Royal Free Hospital</span></a></span></u>,
London. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies
will be used for medical research purposes <b>only</b>. No staff wages or admin. Thank You. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Coming Up: OCTOBER is RAYNAUD'S AWARENESS MONTH </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">Living the dream, scleroderma style. </span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"> </span><br />
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<img border="0" data-original-height="423" data-original-width="719" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUDiE9ItkkFR8Z0vFZEIefQYaM5Fdu5118faaozS4hkEMqLpTqtKk-WBLQqKNhKhYzq6J0ArxlOXMcfxAnFrgTY38TwDw-FjYdUxSgOQ_bdn7sdyU-V-B83YUZgpXdfmV11pAYIKqs1YU/s400/TwImg-20160809-232349.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An edited version of this article was published <a href="https://sclerodermanews.com/2018/09/12/scleroderma-tooth-fairy-dental-issues/" target="_blank"><span style="color: blue;">here</span></a>, in my <a href="https://sclerodermanews.com/category/blog/" target="_blank"><span style="color: blue;">Column</span></a> with Scleroderma News. </span><br />September <span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018. </span> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<img border="0" data-original-height="972" data-original-width="715" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRM06draEoXLKj9NBtLV8HMAyqylt-dgZZJf1LhxBsjDRX7XM9TAKAkrDDczQdWKWTfOCGltb0y2_2Gxd7Bt-xnFAZiY0_2V26luHLSw4oLaZvvv-9hWfbcgT-rW9tEz4HSXAy1kvXyyg/s320/NW+NIHR+Rare+Disease+Day+20.jpg" width="235" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_MnBuZr_Can3fqsFFJoG_-2rQG2s_JB4jJiX1Nmyeop3Y-o96LwSMSsNg60Ct3rTnXvTjuRYOAXhphOknAMRPYVquB8ITsYXWGC6NaRACcdwQJjBD-s6eTaOc91FWbRkou_QTkn-7tU/s400/Westminster-20160302-NWeskimo.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
<br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">For latest updates follow / subscribe: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">@SclerodermaRF </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">@RaynaudsRf </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">research</span></a> at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit,The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
research purposes <b>only</b>. NO wages or admin costs. Thank You. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Scleroderma Tooth Fairy. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-48660091387385772172018-10-29T06:01:00.001-07:002020-03-02T16:43:17.219-08:00The Invisible Disability. Scleroderma, Raynaud's. Autoimmune, Rare Disease.<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBPzZn1eCanz64b31bub58_OCYrkP1-RnxEtWJxCHpv3Oq3zj1MC-NJfxy99L7TH2U1gOGnxNlonlhu_vf8r99AzZG1JJvPLzTUJmFoxoNzj86IVU3-HwPjh-Jq0SMinGOQksIk-YrGTo/s640/2018+Invisible+Disability+Unmet+Need.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">INVISIBLE DISABILITY – Unmet Clinical Need</span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness Month, June 2018</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The
list of symptoms highlighted in the infographic above, is by no means
an exhaustive list of the 'invisible' aspect of living with the
'Scleroderma, Raynaud's' diagnosis. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read more about the 'invisible' aspect, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/10/invisible-disabilities-awareness-week.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my article 'Travelling with an Invisible Disability', Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/travelling-with-invisible-disability.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">More Current <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">Unmet Clinical Needs</span></a>: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">CALCINOSIS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GUM RECESSION, TOOTH
EXTRACTS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SOFT TISSUE, ULCERS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">TELANGIECTASIA,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SCLERODACTYL HANDS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">RAYNAUD'S, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GASTROINTESTINAL,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles:</span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/scleroderma-awareness-month-june-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="1475" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQdiFk9DYiU4bSQYfr5zWOGv8U_HkeROAnY1-LDKN7VGKEZFEncEjt7DJ28rpi_PScWHd0wRzLSsWwPI0_U4LtaC-g2nroF6Fv_CQOeloZyuqjy6vt_yIevsumQAGm6yVu1XdA4W6dNsM/s320/Kev+East+family+and+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="294" /></td></tr>
<tr align="center"><td class="tr-caption"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof
Chris Denton presenting a plaque to Kevin's daughter, Michelle, and
wife, Debby, for funds raised in Kevin's memory for medical research at
the Unit. Thanks to Michelle for the photo.</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-3-medical-research-areas-of.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-2-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-1-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/why-research-and-patient-profiles.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Global Patient
Profiles Campaign Introduction, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This article featured in my column with Scleroderma News, June 2018. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more about my Invisible Disability experience, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<img border="0" data-original-height="771" data-original-width="1100" height="224" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcaS6bOSvjWdTI_EPrGZcDRd0zuyXUDA4-N3Cl3LukYTON-xaOZj801bK4YqeyE37BSN9i5PQnP4SkRf7xtUHYvNP5vJA67FzAQwqq3UNNjpph_eW6CoQ1rOZEEge4L5D9nwheGUL8oTM/s320/Rare+Disease+Day+2019.jpg" width="320" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnuh3-5KpSuPK72Q3o2cRyhlDG0_hbU4cM8bLsXzTH5dljZ4DRQbJ18jTnN5oYI2xVN27PZ0m1NgmgFKokbbmx9_I-EdgLg0jO8p-XfIVJKF8QuSS9Nco0wX1Y3qJzD_iVKmChflsdxbw/s400/2016+Day+30.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">(expert specialist as the clinical lead).</span></span> </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQecKgdOZoiUN5MztR7PLe42WtewQ7eSWfhKvxjW5KNChodxF9bfcOa8bwRUUQM-BmNTNdQWOs4gD3Yy9ViPtabwmYacLWCB-Jb-IHa-JhyqEuzfnPgTP2NWpieQehH5nS8Yp_8XjlgC_f/s400/2019+Feels+like.jpg" width="276" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span>
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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</div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ZuswSyFmIIiUZ8QSx5VDCl1jwi_i-7CDHPBfNh5Ma-dAy-aeU6Qw2QJ0p-Y3iJVK3AcBPUV44Fte6LauyuS0kmmOKgJYydhHVXC-R6gYnr9TkeCw5lXlT-RK4vmsh3zlXbAyPQ-5rgU/s320/NW+%252B+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="176" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">June 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1440" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnUBiegKi3u4tV3zBbMtw7XhbXAopN07y3uVTE18SmWeI2W5bFQifUHF_qjKZKES19zUxUenwg3r914-PQ-fg847TsRHSrfMftFDbATOWXrduHYcmWt0-RdOssPIqFc0MwN-Qy1UYvkSJO/s640/Chat+mag+16.5.19.jpg" style="margin-left: auto; margin-right: auto;" width="354" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
</tbody></table>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><br /></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>Raynaud's</b>: </span></span></span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span> </span></span></span></span><br />
<br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">research</span></a> at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit,The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> INVISIBLE DISABILITY – Unmet Clinical Need</span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness Month, June 2018</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
</div>
<br /><br /></div>
Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-14027608035785547872018-10-19T03:23:00.000-07:002020-03-02T11:45:46.468-08:00Raynaud's Awareness Month, October 2018. Scleroderma, Raynaud's, Autoimmune Rare Disease.<div align="center" class="MsoNoSpacing" style="text-align: center;">
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2shjBizhthbKsGw-g0eDku1MBQhPGyH0ng7IQ30g0JapWUG_NAVwy4gYj9IPFryzHJ7sDhQodThfZt67VEKiFT4_j2_oNtJNNAUZ2F1FbhtYbrCyH2dvzvhhk0ULA8Lp2MkXt-Njm5fc/s640/RURF+Raynaud%2527s+Awareness+Month+2018.jpg" width="640" /></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's Awareness Month, October 2018.</span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><div align="center" class="MsoNoSpacing" style="text-align: center;">
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/raynaudsunit-royalfree</span></a> </span></div>
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<br /></div>
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<br /></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
<br /></div>
<br /></span></span></span><div class="MsoNoSpacing" style="text-align: justify;">
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>October is Raynaud's
Awareness Month. </b></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b> </b> </span></div>
<br />
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<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKw7g5PkwKow5qJreG8K5ZEzXmXD1vKcBXYbjBA3j-LY7m9Nw_nQaQv5QIXugRaIfyik7KaxRYkUSKBQ1Ci8Z1UMA655BUdoIt0jHRoiSPl3pYFx4q2cWXFFEwJiivsxp5VRNdHJSZ_SA/s640/RURF+thermo+awareness+2017.jpg" width="640" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October is also
the month when the beautiful autumnal shades over here in the UK, serve as a
reminder that, my daily reality of ‘full time hibernation’, is looming. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWmuMtktLgZuVsyvR8ylSorLZvDa1AxeYgUpdFwyuSq8ysIjg2_NiTWTqZW1AEcgEK8wcI8_znWQeeXR-xpuZ8ie3up9SUFeDiduJkzPLqrVjr5lLhO2mBoI4oqGvu-Mfc5kZPFZ04zC0/s400/NW+raynauds+left+hand.jpg" width="400" /></div>
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<img border="0" data-original-height="768" data-original-width="1024" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW5LjUSoQnG20G4TWJKgv5Nyz2YIbTMNbeR7TpxaKt8TTCDYI0ag827SAGqQ5326OGViqu1VXzwdmh5YH7QSzv44G6zB816imfX2fthzuMU_8qYIKXWMXKjl7IUFmABAfd-Evvt-KkLhQ/s400/NW+raynauds+right+hand.jpg" width="400" /> </div>
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<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/raynauds-scleroderma-50-shades-of-blue.html" target="_blank"><span style="color: blue;">50 shades of blue</span></a> 'party
trick', whereby my hands and feet change colour at the slightest temperature
decrease, is extremely difficult to control during this time of year. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have detailed my
Raynaud’s <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">reality</span></a>, highlighting the
immense impact that this diagnosis has on my life, combining with the full time
job of respecting my scleroderma symptoms. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Jan 2017 <a href="https://www.youtube.com/watch?v=bpYQHId0wQ4" target="_blank"><span style="color: blue;">video</span></a>: </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/bpYQHId0wQ4/0.jpg" src="https://www.youtube.com/embed/bpYQHId0wQ4?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/03/living-dream-as-real-life-tin-man.html" target="_blank"><span style="color: blue;">tin man body</span></a>, along with <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue;">fatigue</span></a> and <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue;">mobility</span></a> challenges, remain
constant sources of <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-job-today-is-to-simply-get-better.html" target="_blank"><span style="color: blue;">frustration</span></a> and make for a <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/scleroderma-raynauds-rare-disease-full.html" target="_blank"><span style="color: blue;">full time job</span></a> with managing
my symptoms. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<br />
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqiT9hqg-SohM57MI2hcpnd1iWQNbsxprGy-vGKLH60Pra-10je-mDArmjvF6ZKKm1l3Wu3ePJI_IXTzOcdRyCxxApyTPRX4T5UnUjLOARyUklLNA9G0VL8i-dGfDX1EZXm1xKsIthQk4/s640/2018+Symptoms+feels+like.jpg" width="640" /></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/ah-great-another-day-to-spend-in-bed_9.html" target="_blank"><span style="color: blue;">Ah great another day to spend in bed</span></a>'
is <b>not</b> my favourite mantra. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">However to look at
me, people kindly tell me ‘<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/invisible-disabilities-awareness-week.html" target="_blank"><span style="color: blue;">But, you look so well</span></a>’
</span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">But, my reality is
that my Raynaud’s symptoms keep me under 'house arrest' all year
round. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s
sensitivity is so severe that an attack can be induced by me just moving from
one room to another, indoors! </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Therefore, my
symptoms are easier to manage by avoiding any temperature change.<br />
<br />
My inner ‘Bond Girl’ absconded years ago, with me being forced to wear Ugg
boots and gloves even in the summer. </span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1063" data-original-width="666" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeojv1Mla4ArLTA1TK5cN2u5-41ujcoLUwqh8nyvOXjaz9tWFZcEhw0uERRMcYer4TOufIHyHZQztoVMGHXePYeSqJWNtlm9shtWeedO_a4ZGnJzJfhbV1qQkAbEqyIMYvp0mvKxJxQwc/s400/12983438_1686097758274364_4744672236386267688_o.jpg" style="margin-left: auto; margin-right: auto;" width="250" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Hottest day of 2013</span></td></tr>
</tbody></table>
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">There is currently
no cure for Raynaud’s, with prescription medicines having blood pressure
altering, unpleasant, side effects. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I no longer
experience as many digital ulcers and the intense, excruciating pain which
comes with them, since taking Bosentan 125mg twice a day. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<div class="separator" style="clear: both; text-align: center;">
<br /><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/I5CediPAOpM/0.jpg" src="https://www.youtube.com/embed/I5CediPAOpM?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
</div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The world trail
blazer Dr Kevin Howell at the Royal Free Hospital has kindly shared this <a href="https://www.youtube.com/watch?v=zWOQsJZxuVo" target="_blank"><span style="color: blue;">video</span></a> which shows the
science happening during a Raynaud's episode. </span><br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyyXFdc5TArEBRpxpbQ9JHedWZcm2lLcPrNz4aGcCHquim65h_zAGdrvGXw7LWHK4QJ3alHDOK2CQlsQJ2YtsDEcuoqkCHn47BQUsJLAVwfG4ctBMmGs2oo2Oy6qNBQezPqsfVblCnJto/s640/RURF+-+Thermo+camera.jpg" style="margin-left: auto; margin-right: auto;" width="360" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Thermography equipment</span></td></tr>
</tbody></table>
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Thermograph
Imagery machinery costs in excess of £5,000. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdoXQk2eIs8c9JAnp600IVLxUvcCVJhNxcW3BY5o9WvCglMFeHZf1m2CUgo4reYcgPjCXBOssynbFZFYVbJrEry55V8TJtjX9vmiHSngcxGd9zhb0Lp6YGPIZe91bu4i199YpAI8ufgNs/s400/Capillaroscopy+Bench.jpg" width="400" /></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">Nailfold Capillaroscopy</span></a> is
the diagnostic test used to identify possible blood vessel damage, which can
indicate a possible underlying autoimmune condition. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Nailfold
Capillaroscopy equipment costs around £1,500. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="480" data-original-width="640" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizgTX3hzqzgWWzvZoP1qfai7xFV2ajS_PXAYtAMLT_WHswnPeULmrzacXGJLpG28DQydcAe74hsR-DdUGjxpCabLhxbSxMMFSs3owyAb2OIjAEMedgsa590pbBpiDjF7w2h9mBPzpOiX4/s400/image1%25281%2529.JPG" width="400" /></div>
</div>
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<br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<b><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Kevin
Howell</span></b></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<b><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">PhDASIS
FRPS MIPEM CSci </span></b></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<b><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical
Scientist and Honorary Research Associate</span></b><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span lang="EN" style="color: #393736; font-family: "arial" , sans-serif; font-size: 12.0pt;">UCL Institute of Immunity and
Transplantation</span><span lang="EN" style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Royal
Free Campus </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Rowland
Hill Street </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">London.
NW3 2PF. UK. </span><br />
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Without a shadow of
doubt, the entire global Raynaud’s community are eternally grateful to Dr
Howell for his dedication and commitment to the Raynaud’s enigma over the
course of his career within the NHS, which he is currently celebrating his 26<sup>th</sup>
year. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Many congratulations
and Thank You Dr Howell, the global Raynaud’s trailblazer. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s400/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Dr Howell and I, Sept 2017</span></td></tr>
</tbody></table>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Infact, October
is a very busy month for our community, providing lots of awareness platform
opportunities. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October 14-
20th is <a href="https://invisibledisabilities.org/seminarsandevents/invisible-disabilities-week/attachment/invisible-disabilities-week-2018-october-14-thru-20-2018/" target="_blank"><span style="color: blue;">Invisible Disabilities</span></a>
week. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.eular.org/world_arthritis_day.cfm" target="_blank"><span style="color: blue;">World Arthritis Day</span></a> is October 12th. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Ironically, <a href="http://blog.raynaudsscleroderma.co.uk/2017/10/rip-anne-mawdsley-31542-121014-raynauds.html" target="_blank"><span style="color: blue;">October 12th</span></a> is also the
anniversary of the passing of the late scleroderma and Raynaud's trailblazer, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/anne-mawdsley-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">Anne Mawdsley</span></a>. </span><br />
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<img border="0" data-original-height="107" data-original-width="180" height="237" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbc9Q5XRUhHO1isLKnNdJAhZHLQn-A4XvFGJFNy9UdGAxzWEw5kCwURQddV_jo78L-s8-r58iSYm-Q654MjsC8BebZG7-WWGH9nTCZlPhpcGybuKvhi9k42Ts20XLcporO64odnsjpCvw/s400/15094985_1247832735280759_3320376721336467180_n.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To whom, I am
eternally grateful for her friendship, as well as, for all that Anne did to
help our community gain a voice over the last few decades. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This was highlighted
and recognised within the P152 Poster ‘Optimizing Scleroderma Centers of
Excellence: Perspectives from Patients and Systemic Sclerosis (SSc) Experts’
presented at the 4<sup>th</sup> Systemic Sclerosis World Congress held in
Lisbon 2016. </span><br />
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<img border="0" data-original-height="554" data-original-width="1600" height="137" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV1aNs3UVSa9cHiLNsvMdX-qcWvojBcDlR92d7ospmKB1YMGEmrYv7KCSSUb08adUFFgAbU2q3sYakV_WHbpulQQPe-ckHJRrcEkG4SCuYM9k6iPl0Yw__fVijTA4ihMeBFWpAlfhFvp4/s400/JSRD-Mail-Up-Header.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">With an
acknowledgement '<b>dedicated to the memory of Anne, founder of the Raynaud’s
and Scleroderma Association UK, who raised over 10 million pounds for SSc
research, education and advocacy in her lifetime</b>.' </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">P152 Poster is
included within <a href="http://www.sclerodermajournal.com/article/46cc360c-dc9e-4030-98da-6b5da7f2a0b8" target="_blank"><span style="color: blue;">Volume 1 Number 1</span></a> of the
Journal of Scleroderma and Related Disorders. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">During the
course of my global patient profiles <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">campaign</span></a> for Scleroderma
Awareness Month 2017 and 2018, <b style="mso-bidi-font-weight: normal;">every
patient</b> detailed how Raynaud’s and <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/raynauds-scleroderma-and-digital-ulcers.html" target="_blank"><span style="color: blue;">digital ulcers</span></a> were a
continual problem to them. <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/global-patient-profiles-index-june.html" target="_blank"><span style="color: blue;">INDEX</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Other <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">unmet clinical needs</span></a>, which
patients have in common include: </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">CALCINOSIS</span></a>, </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">GUM RECESSION</span></a>, </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">SOFT TISSUE, ULCERS</span></a>,
</span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">TELANGIECTASIA</span></a>, </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">SCLERODACTYL HANDS</span></a>,
</span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">RAYNAUD'S</span></a>, </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">GASTROINTESTINAL</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am honored to be a
<a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">patient research ambassador</span></a>
with the National Institute for Health Research. <a href="https://www.youtube.com/watch?v=Di7IuS88bKI" target="_blank"><span style="color: blue;">video</span></a>. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Overall, for optimum
patient care, 3 hallmarks preside: </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a><span style="mso-spacerun: yes;"> </span><span style="color: blue;"> </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a><span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">medical</span><span style="color: blue; font-family: "arial" , sans-serif; font-size: 12.0pt;"> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’</span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">(expert specialist as the clinical lead). </span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHMBDb1c3CBevpmbYwtgXWa44grgaGLdoun3jHvGaIKfd7d-Z3HyMd8EdEoHS_u54MaJyNhqSKLQIdjCWTdEhIUIHs_rn5w1fnA-Bu01l_Kg0Ld355EVmt7kYi8BkbmxSYF2Vv7ZnrVHU/s640/2016+Day+30.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In the meantime, I
continue to remind myself that '<a href="http://blog.raynaudsscleroderma.co.uk/2017/04/my-job-today-is-to-simply-get-better.html" target="_blank"><span style="color: blue;">My Job Today is to Simply Get Better</span></a>',
with hope, and my canine diva dream team, as my constant companions. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Follow: </span></div>
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<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Facebook Page: </span></span><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="mso-bookmark: _Hlk516925027;"><span style="color: blue; font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynauds Scleroderma Awareness Global Patients</span></span></a><span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
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<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Twitter, Instagram, Blogger, YouTube: @SclerodermaRF @RaynaudsRf </span></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld
#RaynaudsFreeWorld </span></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span></span><a href="https://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="mso-bookmark: _Hlk516925027;"><span style="color: blue; font-family: "arial" , sans-serif; font-size: 12.0pt;">DONATE</span></span></a><span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help fund medical research
at </span></span><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="mso-bookmark: _Hlk516925027;"><span style="color: blue; font-family: "arial" , sans-serif; font-size: 12.0pt;">The Raynaud's Unit, The Royal Free Hospital, London.</span></span></a><span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span><br />
<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></div>
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<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span></span><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="mso-bookmark: _Hlk516925027;"><span style="color: blue; font-family: "arial" , sans-serif; font-size: 12.0pt;">DONATE</span></span></a><span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help fund medical research
at </span></span><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="mso-bookmark: _Hlk516925027;"><span style="color: blue; font-family: "arial" , sans-serif; font-size: 12.0pt;">The Scleroderma Unit, The Royal Free Hospital, London.</span></span></a><span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span><br />
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<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
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<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
research purposes <b>only</b>. Thank You. </span></span><br />
<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October 2018. </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>#SclerodermaFreeWorld
#RaynaudsFreeWorld</b></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An edited version of this article, Click <a href="https://sclerodermanews.com/2018/10/10/scleroderma-raynauds-awareness-month-october-2018/" target="_blank"><span style="color: blue;">here</span></a>, was published in my <a href="https://sclerodermanews.com/category/blog/" target="_blank"><span style="color: blue;">Column</span></a> with Scleroderma News. Oct 2018. </span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">Raynaud’s
Unit, Royal Free Hospital, UK. <a href="https://www.facebook.com/Raynauds-Unit-Royal-Free-Hospital-1781835352080853/" target="_blank"><span style="color: blue;">Facebook Page</span></a> </span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If you would like to
add the Raynaud's twibbon to your Facebook Profile Picture - please Click <a href="https://twibbon.com/support/raynauds-awareness-month" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<img border="0" data-original-height="972" data-original-width="715" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRM06draEoXLKj9NBtLV8HMAyqylt-dgZZJf1LhxBsjDRX7XM9TAKAkrDDczQdWKWTfOCGltb0y2_2Gxd7Bt-xnFAZiY0_2V26luHLSw4oLaZvvv-9hWfbcgT-rW9tEz4HSXAy1kvXyyg/s320/NW+NIHR+Rare+Disease+Day+20.jpg" width="235" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_MnBuZr_Can3fqsFFJoG_-2rQG2s_JB4jJiX1Nmyeop3Y-o96LwSMSsNg60Ct3rTnXvTjuRYOAXhphOknAMRPYVquB8ITsYXWGC6NaRACcdwQJjBD-s6eTaOc91FWbRkou_QTkn-7tU/s400/Westminster-20160302-NWeskimo.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">June 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">research</span></a> at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit,The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's Awareness Month, October 2018.</span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><div align="center" class="MsoNoSpacing" style="text-align: center;">
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/raynaudsunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
<br /></div>
</span></span></span><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><div align="center" class="MsoNoSpacing" style="text-align: center;">
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span></span></span></span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-24089293802935896582018-10-03T02:12:00.000-07:002020-03-01T12:43:31.273-08:0050 Shades of Blue. Raynaud's Awareness. The Raynaud's Unit, the Royal Free NHS Hospital, London.<div class="MsoNoSpacing" style="text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxC9DTCe05woRpO6w7EdB2vgJu0EiKAWZ-KPODqFk-BSYclKmJcY_QTmWAucdjogXMZe3SLmiJicx0C-ktsRDdGvohBpJph0jmsPbbcshES-VvV6l_gYOHzET38tGbjuN9zCDXPrCJQtE/s640/RURF+blog+50+shades.jpg" width="640" /><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Living the Dream - 50 Shades of Blue</span><br />
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's Awareness. </span><br />
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">The Raynaud's Unit, the Royal Free NHS Hospital, London. </span><br />
<br /><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: #4472c4; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: #4472c4; mso-themecolor: accent1;"><a href="http://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/raynaudsunit-royalfree</span></a></span></span></span><br />
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld #Research</span></div>
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<a href="http://raynaudsrf.blogspot.com/" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">raynaudsrf.blogspot.com</span></span></a><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Here in the UK, Autumn has
arrived. The colour changes displayed by the natural landscape at this time
year, are stunningly beautiful. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This annual display of nature showing off it’s
true colours, provides a reminder that winter is on its way. And, winter, being
mine, and every patient with a similar diagnosis, our Nemesis season. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/bpYQHId0wQ4/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/bpYQHId0wQ4?feature=player_embedded" width="320"></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">However, sadly, my daily reality
is that t</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">he
severity of my Raynaud’s involvement, keeps me under <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/you-should-get-out-more-scleroderma.html" target="_blank"><span style="color: blue;">house arrest</span></a> all year round. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I must wear thick fleecy socks and Ugg boots, as
well as, gloves, in an attempt to prevent a Raynaud’s attack, as there is no
cure. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Hottest day of 2013</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My sensitivity is such, that the smallest decrease
in temperature, regardless of how warm, will trigger a Raynaud’s attack in my
hands and toes. My ears and nose may also become involved. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My hands and feet </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">are very rarely</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> the same pink-y colour as a ‘normal’
person. My ‘normal’ is a paler pink. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For me - colour changes occur in every Raynaud’s attack. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">At the onset of a Raynaud’s attack, my pale pink
will turn to white, visibly showing that there is total blood loss to that
particular body part. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Depending on the severity of the Raynaud’s attack,
the white discolouration may be preceded by a blue tinge to the body area. During
the white colour stage, it is impossible for me to feel anything with the body
area which is affected. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For Example: my hands / feet (whichever area is
affected on a particular attack), will feel numb and extremely cold. My toes
and fingers will become extremely rigid. This is painful and extremely
debilitating. </span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWmuMtktLgZuVsyvR8ylSorLZvDa1AxeYgUpdFwyuSq8ysIjg2_NiTWTqZW1AEcgEK8wcI8_znWQeeXR-xpuZ8ie3up9SUFeDiduJkzPLqrVjr5lLhO2mBoI4oqGvu-Mfc5kZPFZ04zC0/s400/NW+raynauds+left+hand.jpg" width="400" /></div>
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<img border="0" data-original-height="768" data-original-width="1024" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW5LjUSoQnG20G4TWJKgv5Nyz2YIbTMNbeR7TpxaKt8TTCDYI0ag827SAGqQ5326OGViqu1VXzwdmh5YH7QSzv44G6zB816imfX2fthzuMU_8qYIKXWMXKjl7IUFmABAfd-Evvt-KkLhQ/s400/NW+raynauds+right+hand.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Upon the body area becoming warmer with an increase
in temperature, the colour changes begin. This shows a gradual return of blood
to the affected area. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My rigid white will gradually transform into a very
dark blue colour, which will then slowly change into lighter shades of blue, as
the body part becomes warmer. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Whilst the blood returns to the vessels, the pain
is excruciating. There are no words which can even try to describe this horrific
sensation. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Maybe ‘slam your hand in a car door’, or, imagine having that body
part being torched with hot pokers. Total exhaustion follows. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">A few years ago, I was horrified to see my hands turn
black due to me being out in the cold for too long. This still happened whilst wearing
my compulsory ‘polar Bond Girl uniform’. </span></div>
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<br /></div>
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<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b><span style="color: red;">Prevention</span> of an attack is crucial,
since there is no cure.</b> </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
</div>
<div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">During
the course of my global patient profiles <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">campaign</span></a>
for Scleroderma Awareness Month 2017 and 2018, <b style="mso-bidi-font-weight: normal;">every patient</b> detailed how Raynaud’s and <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/raynauds-scleroderma-and-digital-ulcers.html" target="_blank"><span style="color: blue;">digital ulcers</span></a> were a continual problem to them. <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/global-patient-profiles-index-june.html" target="_blank"><span style="color: blue;">INDEX</span></a>
<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The
digital ulcer which appeared in March on my right index finger, still remains in
situ. This appeared further to excessive keyboard use during March, Autoimmune
Disease Awareness Month. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Hence my absence from social media for the last month. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx79CroBBJYqh5ko930eSXffYViWyMNGrGORGHO7rpcSM_8gno5MbG5nLpDALkpSOZLm_bpxNVEMoJrbkQ4G44C7sHQFywZoQKTQqz79arzY98D9pqNTcpbSlVNcrSszjG5ozkDoZtuHc/s400/Ulcer+March+2018.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">March 2018</span></td></tr>
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<tr><td style="text-align: center;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwiqNV9RVsxyYx1mnldCG-2UPu95hve59jgjsi4-cpXiBwql1rg5EPjZzziM7oO_PKyI1YbwnpBHnJsC2NIg_iA7bowE8SQJ3ZQKbWjEqkeS7wJFwdHJ5ooJfQO3BiUgG8o4qvPnUEteI/s320/NW+Ulcer+Sept+2018.JPG" style="margin-left: auto; margin-right: auto;" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">September 2018</span></td></tr>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">A thick,
self made, padded bandage with minimal adhesive helps to protect the very
tender, thin, red raw skin. </span><br />
<br />
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<img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwElukrx39it3PihMpm8J4HfmWGEHftYZhn5mgCsEbKQF3JMUxv3nAw3zGX2r3A4Q3qrbUnB_a6jZD4vqeAJwrprLHJdWFKlWPVvGb1DjPUZnpVCvmLNWewJmDK3FKyC9k09R42sZ8NQA/s320/Ulcer+March+2018+bandage+close.JPG" width="180" /></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">However,
I know that when it comes to digital ulcers, I am very lucky, even though their
pain and daily management is extremely soul testing. </span></div>
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<br /></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Combined with calcinosis and digital ulcers,
this makes for a very painful and debilitating reality.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span> </span></span><br />
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<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/l_u1ZUo83YM/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/l_u1ZUo83YM?feature=player_embedded" width="320"></iframe></div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Other <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">unmet clinical needs</span></a>, which
patients have in common include: </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/qSVpjk1irJc/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/qSVpjk1irJc?feature=player_embedded" width="320"></iframe></div>
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">CALCINOSIS</span></a>, </span><br />
<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">GUM RECESSION</span></a>, </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">SOFT TISSUE, ULCERS</span></a>,
</span><br />
<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">TELANGIECTASIA</span></a>, </span><br />
<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">SCLERODACTYL HANDS</span></a>,
</span><br />
<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">RAYNAUD'S</span></a>, </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">GASTROINTESTINAL</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am honored to be a
<a href="https://www.nihr.ac.uk/news/nicola-whitehill-becoming-a-patient-research-ambassador-was-a-natural-next-step/8075" target="_blank"><span style="color: blue;">patient research ambassador</span></a>
with the National Institute for Health Research. <a href="https://www.youtube.com/watch?v=Di7IuS88bKI" target="_blank"><span style="color: blue;">video</span></a>. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<br />
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Di7IuS88bKI/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/Di7IuS88bKI?feature=player_embedded" width="320"></iframe></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><br /></span></span></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
<br />
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
</div>
<div style="text-align: center;">
<div style="text-align: center;">
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<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnuh3-5KpSuPK72Q3o2cRyhlDG0_hbU4cM8bLsXzTH5dljZ4DRQbJ18jTnN5oYI2xVN27PZ0m1NgmgFKokbbmx9_I-EdgLg0jO8p-XfIVJKF8QuSS9Nco0wX1Y3qJzD_iVKmChflsdxbw/s640/2016+Day+30.jpg" width="640" /></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">(expert specialist as the clinical lead).</span></span> </span></span></span></span></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Where, investment in medical research is
crucial, to improve the day to day reality, as well as, the long term outlook
for the entire global scleroderma community. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In the meantime, I
continue to remind myself that '<a href="http://blog.raynaudsscleroderma.co.uk/2017/04/my-job-today-is-to-simply-get-better.html" target="_blank"><span style="color: blue;">My Job Today is to Simply Get Better</span></a>', with hope, and my canine diva dream team, as my constant companions. </span></div>
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAVfkIQAm1nlcxTe31qunZNmCLmwxw3S-TYt44MIgTUMI7EPv23tDFtcKetPymGF-mqgpTyMhwGmwje3pcEyRvWeVdhYcjDekcrOB7JsKqWs9E1PzR5VhblCt_47ljijDFhd58wq6W1B8/s640/2019+Feels+like.jpg" width="442" /></div>
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<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span></span><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;"><span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">DONATE</span></span></span></a><span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help fund
medical research at </span></span><span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue;">The Scleroderma Unit, The Royal Free Hospital, London.</span></a> </span></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="mso-bookmark: _Hlk516925027;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies
will be used for medical research purposes <b>only</b>. Thank You. </span></span></div>
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<img border="0" data-original-height="470" data-original-width="800" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4QN-mRGF1K_AB_cAoXL2990-6bRcsxiIoYW3_jlJaQ3FzKAdQPFXHLE2QJN8Fy-LWYsqvBcrhCmFvqxWuph-q4rTo1VFE7tKH-18Y_Cut9YrFtzOQoe6BIrL3UIuQffzk52xyoNzigXc/s400/13690825_916172558511837_1552497729413727204_n.png" width="400" /> </div>
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<img border="0" data-original-height="320" data-original-width="320" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRYf8wa4D9mWOPdvQNNG4aM6VTEFj15LjFRA-Q0-auxdFOYRBeN4d45KQFlP4slpKQ_q1DWpBT4CODPgmKSPPnGZPbKCbhC9ZSXeoje27QxcZP001GdzNXGRZ5yq5RQO86PwrV__uT4xM/s400/NW+Raynauds+twibbon.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>#SclerodermaFreeWorld
#RaynaudsFreeWorld</b></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span>
<br />
<br />
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<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An edited version of this article, Click <a href="https://sclerodermanews.com/2018/09/26/raynauds-scleroderma-50-shades-blue/" target="_blank"><span style="color: blue;">here</span></a>, was published in my <a href="https://sclerodermanews.com/category/blog/" target="_blank"><span style="color: blue;">Column</span></a> with Scleroderma News. Sept 2018. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<img border="0" data-original-height="423" data-original-width="719" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcQXW33MEZwnFXdQ-H1IuBa5sfyon1WzA3vWe5asSF-oEyxJuQxUS4DfxC-XqChJCg3O24QwVX2Cwx9rASOOuf57mBoYoPfWUISEl4gwG9PEDPcFHxVIwTyJqWI9ZL7ZlZ5Sq-YtT2XFc/s400/Living+the+dream+scleroderma+style.jpg" width="400" /> </div>
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<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR-G0nEigW9h4Qlww7mGJtt_wf28BKo4Yd7tu3P5xmsrZM_TgKZ5rPnxA9fdulBpThDKw2QBwRGQyCtOKMJPIl6EN6_LNXA5-dBORxgYkGfkwX0k1jQIhfTk3y8V_y6ETbUf8VkScqKFg/s640/2019+RaynaudsRF+Left+Hand.jpg" width="640" /></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK
treatment guidelines for Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">The Raynaud's Unit, the Royal Free NHS
Hospital, London</span></span><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">, Click </span><a href="https://raynaudsrf.blogspot.com/2019/10/the-raynauds-unit-royal-free-nhs.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a>. </span> </span><br />
<br />
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the
EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"></span> </span><br />
<br />
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">To view a thermal imaging video and equipment, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span> </span><br />
<br />
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">To view a thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span> </span></div>
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<div class="separator" style="clear: both; text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">To view more
about the thermograph image, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/zjJawpNnWQQ/0.jpg" src="https://www.youtube.com/embed/zjJawpNnWQQ?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'How to diagnose Raynaud's', Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span><br />
<br /><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's Awareness 2018, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/10/raynauds-awareness-month-october-2018.html" target="_blank"><span style="color: blue;">here</span></a>
</span></span><br />
</div>
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;">Click <a href="https://raynaudsrf.blogspot.com/2019/10/raynauds-social-media-twibbon-raynauds.html" target="_blank"><span style="color: blue;">here</span></a> for Twibbon </span></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Please <a href="https://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">DONATE</span></a>
to help fund medical research into the cause and cure for Raynaud's, at the
Raynaud's Unit, The Royal Free Hospital, UK. </span><br />
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">All of your
monies will be used for medical research purposes only, lead by the world trail
blazer <a href="https://www.ucl.ac.uk/immunity-transplantation/about/people/kevin-howell" target="_blank"><span style="color: blue;">Dr Kevin Howell</span></a>.</span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Dr Howell and I, Sept 2017</span><span style="color: black; font-family: "arial" , sans-serif; font-size: 14.0pt; line-height: 107%;"> </span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.facebook.com/Raynauds-Unit-Royal-Free-Hospital-1781835352080853/" target="_blank"><span style="color: blue;">
</span></a></span><br />
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's Awareness 2019 Video: </span></div>
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/LwEMpz77N_I/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/LwEMpz77N_I?feature=player_embedded" width="320"></iframe> </div>
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<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<br /></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<img border="0" data-original-height="972" data-original-width="715" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRM06draEoXLKj9NBtLV8HMAyqylt-dgZZJf1LhxBsjDRX7XM9TAKAkrDDczQdWKWTfOCGltb0y2_2Gxd7Bt-xnFAZiY0_2V26luHLSw4oLaZvvv-9hWfbcgT-rW9tEz4HSXAy1kvXyyg/s320/NW+NIHR+Rare+Disease+Day+20.jpg" width="235" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQecKgdOZoiUN5MztR7PLe42WtewQ7eSWfhKvxjW5KNChodxF9bfcOa8bwRUUQM-BmNTNdQWOs4gD3Yy9ViPtabwmYacLWCB-Jb-IHa-JhyqEuzfnPgTP2NWpieQehH5nS8Yp_8XjlgC_f/s400/2019+Feels+like.jpg" width="276" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">research</span></a> at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit,The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Living the Dream - 50 Shades of Blue</span><div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's Awareness. </span><br />
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">The Raynaud's Unit, the Royal Free NHS Hospital, London. </span><br />
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"></span><br />
<br /><span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: #4472c4; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: #4472c4; mso-themecolor: accent1;"><a href="http://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/raynaudsunit-royalfree</span></a></span></span></span><br />
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld #Research</span></div>
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<a href="http://raynaudsrf.blogspot.com/" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">raynaudsrf.blogspot.com</span></span></a><br />
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-80013009400589876802018-10-01T01:48:00.000-07:002020-02-24T03:56:38.466-08:00Raynaud's Social Media Twibbon. Raynaud's Awareness Month, October 2019. Scleroderma, Autoimmune, Rare Disease <div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVSaCzXZPYP7C0D4sOt-PZ9dj7URC8cTxM42VdQd4xp2Jr2p-IYklLduzQBFDMQJRqOihhucqLSlYdhmqvW5m6hgi42zXqoi37e-sySeGl8hccdT9iMi0QvGNRSIwO1e2rtLfPzKKqFxw/s640/2019+RaynaudsRF+Twibbon.jpg" width="640" /></div>
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Media Twibbon. </span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's
Awareness Month, October 2019. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma,
Autoimmune, Rare Disease </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld #RaynaudsFreeWorld #Research</span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5dJpJAT9dOuE4iRbKFKDz0ykl9lMYhqnwGPyyDe_-Dsb98VQrIlSylBfGGWSD5iRmmHQViocfImmoyh2OWaMIjYQqkg-LdHRs3PaPFzm_iTGN1H5c0KpbaxIFnUz_ozboIm6oqWAduU8/s400/2019+RaynaudsRF+Twibbon+Download.jpg" width="400" /><span id="goog_668201151"></span><span id="goog_668201152"></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If you would like to
add the Raynaud's twibbon to your Facebook / social media, Profile Picture - please Click <a href="https://twibbon.com/support/raynauds-awareness-month" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view more about the thermograph video equipment, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view more about the thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1063" data-original-width="666" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH2eGwYu5603oPABaa0YK0w8zXSupk7RdrCFIxjk-xYvreYH_7hjyH8qhGl1JTtT0MGIPcx-3bb1xR_o4Nh0IrufNdtYxz4-DCyBxQ6bev2o4Ng8H-ed-WOhMThEgW72lBYXkIjnww6Kc/s400/NW+-+BEACH+2013.jpg" style="margin-left: auto; margin-right: auto;" width="250" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Hottest day of 2013 - Im wearing Ugg boots and gloves to try and prevent a Raynaud's attack! </span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'How to diagnose Raynaud's', Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/10/raynauds-scleroderma-50-shades-of-blue.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's Awareness 2018, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/10/raynauds-awareness-month-october-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please <a href="https://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">DONATE</span></a> to help fund medical research
into the cause and cure for Raynaud's, at the Raynaud's Unit, The Royal Free
Hospital, UK. </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigCZyTHdxx9HSz9Uva83aZNeG1xlSe230SZRTqjGzOy9uuVBtSNWijIEn9sW6HvfbdWikY9NsM1WedNxGOdK5qYkEzmcFCW6eMKitYNnFaEzEHjwHdgXjEOTVYEaZrtCEPUC5YY-4PBS0/s640/2019+RaynaudsRF+hands%252C+thermo%252C+foot.jpg" width="640" /></div>
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All of your monies will be used for medical research purposes only, lead by the world trail blazer <a href="https://www.ucl.ac.uk/immunity-transplantation/about/people/kevin-howell" target="_blank"><span style="color: blue;">Dr Kevin Howell</span></a>. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld #RaynaudsAwarenessMonth #Research </span></div>
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<a href="https://www.facebook.com/Raynauds-Unit-Royal-Free-Hospital-1781835352080853/" target="_blank"><span style="color: blue;">Facebook Page</span></a>: Raynauds Unit Royal Free Hospital</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Twitter, You Tube, Instagram: @RaynaudsRf</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Living the dream,
hoping for a cure .... </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco del Galdo </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span> </span></span></span></span></div>
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Flashback</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span></div>
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_MnBuZr_Can3fqsFFJoG_-2rQG2s_JB4jJiX1Nmyeop3Y-o96LwSMSsNg60Ct3rTnXvTjuRYOAXhphOknAMRPYVquB8ITsYXWGC6NaRACcdwQJjBD-s6eTaOc91FWbRkou_QTkn-7tU/s400/Westminster-20160302-NWeskimo.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaoR7tadUrt8QX0e2xM9bFk-ePm7ytHtZrkjkiOxz5utOBNIyEWARS1UYLX8L5RMXqAvVHt2YsXWyw-dftakF6NlnEVAtSVoGiRE4kvpm1V8zuGI3ct78w1LmilQIo4lnVGCosX5hnbGI/s400/2016+Day+30.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"> supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQecKgdOZoiUN5MztR7PLe42WtewQ7eSWfhKvxjW5KNChodxF9bfcOa8bwRUUQM-BmNTNdQWOs4gD3Yy9ViPtabwmYacLWCB-Jb-IHa-JhyqEuzfnPgTP2NWpieQehH5nS8Yp_8XjlgC_f/s400/2019+Feels+like.jpg" width="276" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1440" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnUBiegKi3u4tV3zBbMtw7XhbXAopN07y3uVTE18SmWeI2W5bFQifUHF_qjKZKES19zUxUenwg3r914-PQ-fg847TsRHSrfMftFDbATOWXrduHYcmWt0-RdOssPIqFc0MwN-Qy1UYvkSJO/s640/Chat+mag+16.5.19.jpg" style="margin-left: auto; margin-right: auto;" width="354" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
</tbody></table>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
<br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><br /></span>
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">For latest updates follow / subscribe: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">@SclerodermaRF </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">@RaynaudsRf </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Twitter, Instagram, Blogger, YouTube, Facebook Page: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="color: blue;">Raynauds Scleroderma Awareness Global Patients</span></a> </span></div>
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld
#RaynaudsFreeWorld #Research </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">research</span></a> at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit,The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
research purposes <b>only</b>. NO wages or admin costs. Thank You. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's Social
Media Twibbon. </span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's
Awareness Month, October 2019. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma,
Autoimmune, Rare Disease </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld #RaynaudsFreeWorld #Research</span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-35061044928766633972018-09-29T06:13:00.002-07:002020-03-01T13:25:55.505-08:00Medical Research. Get involved: Take Part, Raise Awareness. Raynaud's, Scleroderma, Autoimmune Rare Disease.<div style="text-align: justify;">
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<img border="0" data-original-height="771" data-original-width="1100" height="448" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH-deWzhOniR0uK7oQL5hTU-3RnhqbuHxLAbCEQjTqKKdhyqN5FmIl4oTC3bAfiKMf5UjttuVApCW-c2LzyS9frbASo09G1MAj6SpZkvFymBUKopTIx5NemjWHF_Ld0lz3OZCctQXAzkk/s640/Medical+Research+Get+Involved.+Take+Part%252C+Raise+Awareness.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical Research - Get involved: Take Part, Raise Awareness </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">At the start of this
year, I was delighted to have been invited to join the <a href="https://www.nihr.ac.uk/about-us/our-purpose/" target="_blank"><span style="color: blue;">National Institute for Health Research</span></a> (NIHR) as a <a href="https://www.nihr.ac.uk/news/nicola-whitehill-becoming-a-patient-research-ambassador-was-a-natural-next-step/8075" target="_blank"><span style="color: blue;">Patient Research Ambassador</span></a> (PRA) for the dermatology and
musculo-skeletal departments, The Royal Free Hospital, London. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The NIHR is, </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">‘The most integrated
clinical research system in the world. Funding high quality research; training
and supporting researchers; providing world class facilities.’ <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This role is a huge
honour for me, and one which I am VERY passionate about. <a href="https://www.youtube.com/watch?v=Di7IuS88bKI" target="_blank"><span style="color: blue;">VIDEO</span></a>. </span><br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Di7IuS88bKI/0.jpg" src="https://www.youtube.com/embed/Di7IuS88bKI?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As well as, I am
very passionate about my NHS England CRG <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a09/" target="_blank"><span style="color: blue;">role</span></a>, and European
Medicines Agency <a href="http://www.ema.europa.eu/ema/index.jsp?curl=pages/about_us/general/general_content_000094.jsp&mid=WC0b01ac0580028c79" target="_blank"><span style="color: blue;">role</span></a>. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As, all of these
roles are influencers in the medical research landscape. Ranging from the
design of a clinical trial (my EMA role), to best practice and guidelines (NHS
England role). </span><br />
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<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9JYpsCBa__bv_tSA_pCmqw2WYqKV7R4owZNn9bahFLR734XQOZ_gOQNrEEyUT5H_CEgG0knPvYPdYem9R1AAn3BeTXS7S6hZ2EIaVCI6D9_tkG7kRVJ2h2IVJ0sOxM1P2RJmdonGk-9s/s640/The+Southport+Champion+12.06.18.jpg" width="640" /></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Further to my recent,
local ‘Page 3 Girl’ debut in my local newspaper, (published last month, during June,
Scleroderma Awareness Month), I am truly honoured and humbled to have been quoted on the <a href="https://www.nihr.ac.uk/news/record-numbers-take-part-in-life-sciences-industry-research/8842" target="_blank"><span style="color: blue;">front page</span></a>, as well as, <a href="https://www.nihr.ac.uk/news/record-number-of-patients-have-access-to-new-treatments/8861" target="_blank"><span style="color: blue;">featured</span></a> within, the recently published NIHR annual report. </span><br />
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<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDcrerOzSUWB15XN12FyAAmq9s0kvwG37R2Bk8bYJQricK0RJDuiPpUS5iN8Q2jy8MzjNJ0ENWAbo8Fp1KRN-5k5OcTwakXQLk_Hd2KKcjb5HSsQSDHqlUhvCLAo2O9yqjLYPS7XnpbFc/s640/2018+NIHR+Annual+Report+Front+Page.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">NIHR Annual Report: Front Page</span></td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidXefn3TPHNNpM_Z8tkUPbBTMaPIwxtV87ZnYqPMvhr_RerkX4TFTNPXTwHt8S5jk_6IWq-blMbgvxI0xa8AttOSQZP1IVCYTH_OJvbpK8xSz4gLs1nYBcfWfMUHg2dQNU2uCFZh-hZ8Q/s640/2018+NIHR+Annual+Report+NW+case+study.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">NIHR Annual Report, Case Study</span></td></tr>
</tbody></table>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thus, putting
the spotlight on Raynaud’s and scleroderma, and the huge significance of
medical research within the rare disease community. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I was overjoyed that
the NIHR annual report was shared by various global media. </span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpmUiV85uCRk31xevS3xAEoaMwwT3PMd79CVXlDAChDZK31TwGXE49Hb4It27mLVVizgvuGwtPpg-CkGErAtzQAcPM7iF6-M0caZNw-0sq3wxOFF53CMAGHRbGiBX0woyXAhJXUGwSKBo/s640/2018+NIHR+MedTech.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">MedTech</span></td></tr>
</tbody></table>
<br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Including <a href="https://www.med-technews.com/news/uk-a/" target="_blank"><span style="color: blue;">Med-Tech</span></a>
and <a href="https://www.epmmagazine.com/analysis/figures-from-nihr-demonstrate-success-of-uk-clinical-research/" target="_blank"><span style="color: blue;">The European Pharmaceutical Manufacturer</span></a> quoting me, and naming Raynaud’s
and scleroderma, in their headline story. </span><br />
<br />
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<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKXBP4aZJmJv1GNUMgsiskCXf2tuPUcgp_gwWxrO-U-MRf5NQef9rnmRNhbHBUwnEht19uPlz84abCMWR0ALpuQSnmcBYh7yk-t5AxDClLiUqcz7zK1weCoqJF9VWDKpfYkcnpqyyb894/s640/2018+NIHR+European+Pharmaceutical+Manufacturer.jpg" width="640" /></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As rare disease
patients we know all too well that, any and every day, is an opportunity to
engage conversation about our reality. </span><br />
<br />
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<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5eMPQteEKVcJwBr-mABBwnD2RSXBLbL3Bdu5zofmuMHRUhglcRzaFbyJi5XPgRd0l12k24MweimOZjLJ3zEHjolHR-uNEgIHzFKH7uMOMJJp_yeDao5gj1aYL_yPFkphjKdB3tx_J_Ko/s640/2018+NIHR+Barts+NHS.jpg" width="640" /></div>
</div>
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<br />
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Over here in the UK,
we are truly blessed to have a world class healthcare service by way of the NHS,
paralleled with the NIHR.</span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical research is
the crux to uncovering the cause and cure to not just scleroderma and Raynaud’s,
but to any disease. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This is why, I have made
medical research the underlying theme for all of the articles, which I have
written for my <a href="https://sclerodermanews.com/category/blog/" target="_blank"><span style="color: blue;">column</span></a> with Scleroderma News, and my personal blog: <a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a>,
during the course of the last few years. </span><br />
</div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Also, medical
research has been the theme for Rare Disease Day <a href="http://blog.raynaudsscleroderma.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">2018</span></a>, and <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue;">2017</span></a>. </span><br />
</div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">During my 21 years
of living with diffuse scleroderma and Raynaud’s, I have taken part in several
<a href="http://blog.raynaudsscleroderma.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue;">clinical trials</span></a>. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">All of these trials were led by Prof Chris Denton, at the
Scleroderma Unit, at The Royal Free Hospital. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It was very important
for me to know that the trials were being led by such an expert team. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am not
the most willing of participants of taking any drug, licensed or non licensed,
at the best of times. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">However, I saw my participation
as an opportunity to investigate if there was a mystery compound which could
improve my day to day reality with my symptoms. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And, if I could not
benefit directly, that, patients who may be diagnosed in the future, may benefit
from the therapy, if the results proved favourable for such. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sadly, one of the
difficulties of researching a rare disease is the lack of patient numbers
available, who are eligible to take part. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This is why <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/why-global-collaboration-is-so.html" target="_blank"><span style="color: blue;">global collaboration</span></a>, as well as, global data bases and <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">expert specialist centers</span></a>, are
paramount to make progress in the medical research arena for the rare disease
community. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEt2DPVzFJkWHXonhIs-wg7b98959Nb4lr22oDccJkfVFgBL4kbjkRf8teEEwfZPX1_B-MS0lwWhCdaXhyG74uqNcC-VcCQeQmv5zEA1m3QoCaO7jUSZgGtvM4Jqsra9YcNQhc2nbVtMk/s640/NW+2018+Awareness.jpg" width="640" /></div>
<br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have detailed more about my patient experience
and journey, on <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/nicola-whitehill-uk-scleroderma.html" target="_blank"><span style="color: blue;">Day 12</span></a> of my global patient profiles <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">campaign</span></a>, for Scleroderma
Awareness Month 2018. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<br />
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am extremely grateful to <b style="mso-bidi-font-weight: normal;">all</b> of the patients who have kindly shared their experience for
awareness purposes, as well as, I owe huge thanks to the families of the
patients whom, sadly, have died from the disease. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The conclusions of which, showed that for </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
<br />
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><br /></span></span></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
<br />
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
</div>
<div style="text-align: center;">
<div style="text-align: center;">
<br />
<div class="MsoNoSpacing" style="text-align: justify;">
<br />
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnuh3-5KpSuPK72Q3o2cRyhlDG0_hbU4cM8bLsXzTH5dljZ4DRQbJ18jTnN5oYI2xVN27PZ0m1NgmgFKokbbmx9_I-EdgLg0jO8p-XfIVJKF8QuSS9Nco0wX1Y3qJzD_iVKmChflsdxbw/s400/2016+Day+30.jpg" width="400" /></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">(expert specialist as the clinical lead).</span></span> </span></span></span></span></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><br /></span></span></div>
</div>
</div>
</div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Where, investment in medical research is
crucial, to improve the day to day reality, as well as, the long term outlook
for the entire global scleroderma community. </span></div>
</div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/07/global-patient-profiles-index-june.html" target="_blank"><span style="color: blue;">INDEX</span></a>. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/l_u1ZUo83YM/0.jpg" src="https://www.youtube.com/embed/l_u1ZUo83YM?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<br /></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although as scleroderma patients we are relatively
few in number, 2.5 million worldwide, the small sample of patients included
within my global patients profile campaign show that, there are many <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">unmet clinical needs</span></a>, which patients have in common: </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO3d9iXIbXQ2ciAZUM7UPYW0nPaIJ4L1oldgch31uH1HlVNXhC1uCXzm-pC_ONNb0crU-2A7_LaIRUVb1x_W6JPqgR7X9GGdP0fCG_iibE6X9hLOhUEDOoX8J0WJvM0mCOVsGLAqoyzJg/s320/2018+Calcinosis+Unmet+Need.jpg" width="320" /> </div>
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<br /></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">CALCINOSIS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<br />
</div>
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</div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuo6EGSJjlzpweA4znTP5xwPvCAipTlNJWYwSsOgUfJugJbQpZ9LFMxXm-KThqxeOYEgy71HeoCdAScWOSSdDMUInj5427rtTPSnsyGYSjDv4s-w2qT6sboZITqRvQqfphOcbhCYEnet8/s320/2018+Gum+Unmet+Need.jpg" width="320" /> </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GUM RECESSION, TOOTH
EXTRACTS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieNxB-5mQJ9sehwl82_fNpyh_rcVe1ndYkMylDZ_ETRLjByZ8CW1x4Fjd_m6A8pMZQkqIJFlQQ2xSpTOwcbWo9OxObXOlYrCAVE9zTY9IB4I4z7wjMaPXTFxg483jI6xkhYPsakt3Lwt4/s320/2018+Ulcers+unmet+clinical+need.jpg" width="320" /> </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SOFT TISSUE, ULCERS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-TJPQEzaHAtlZgb8BmSaWb6EnN4IC4A2bhLA0iYXQ28go5PDO-tSHuFUVj3p7ekiDKqnub2sfkQJJ5xOjEn_ZgIla7QtCD3UOhNqS_A8pzgamlYicOSDcaKiKA2EaE5GBD_FO0KsZcSM/s320/2018+Telangiectasia+Unmet+Need.jpg" width="320" /> </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">TELANGIECTASIA,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS4RhQZmizfah-ZwH01tw-mZm25x-7xbsGYZq1FXkql6VDD8k3dACWIY02O4wPhfZRTi4-tPFb9uxnufU5_JjOxJEcQAjmbwSowXws_pN5PwycYNMlVXA9KwmBeTJ6m9MzdBxveEp5KmQ/s320/2018+sclerodactyl+hands+unmet+clinical+need.jpg" width="320" /> </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SCLERODACTYL HANDS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1MhFio2Bz6HapbTXxVANOIFkNjTE-qt0JERNTZklUoIayygmGDchNNtilACsMR5tKFG8eVX5_KjAz-PiPA6t8f76jLOWlmvKLwYNZWiIDsdbwF0O7yAtwzRzbb1R7eLdOsiwdwNzzt7o/s320/2018+Invisible+Disability+Unmet+Need.jpg" width="320" /> </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">INVISIBLE
DISABILITY, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/invisible-disability-unmet-clinical.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqfI8y4oxjuVGBt4-QGMEVKpRegmdu_wNIwKZYtvlpg3ZYyFoqJcpOGFHsk7JXomEtYKfucebSFoVmT3feaTTdb7caWS628-YcygBHXyD7j8G9PR4j7YB3NSNA99CW2kIUsCM_Kyf3QwM/s320/2018+Raynaud%2527s+Unmet+Need.jpg" width="320" /> </div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">RAYNAUD'S, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiHGiwrSjUYB6Ogajj1OAVl3ARAKamk-2kwau3BQBaJ-Wpnu0jc64Qup4VFGjG5QcQ5e9cqPk26V5v8lbFFZv3b4N6tEKJz0HKyVLWy-IV46iXM-wOuskTUhUVRJNFIR34ZI1cgjuTtkM/s320/2018+Gastro+Intestinal+Unmet+Need.jpg" width="320" /> </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GASTROINTESTINAL,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span>
<br />
<div class="MsoNoSpacing" style="text-align: justify;">
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although these unmet needs are not immediately
life threatening, they cause havoc with the day to day quality of each patient’s
life. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">investment</span></a> in medical research will most certainly
<b>improve</b> the currently ‘soul destroying’ reality, these unmet clinical needs bring. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In 2015, I was honoured to become a patient voice
on the NHS England <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a09/" target="_blank"><span style="color: blue;">advisory group</span></a> for Specialised Rheumatology. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In this role, I am totally blown away by the
commitment and dedication shown by the medics involved, to improving the
service which the NHS has to offer in this medical speciality. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I feel particularly honoured to have been a patient
voice, on the NHS England <a href="https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/10/a13pb-sildenafil-bosentan-oct15.pdf" target="_blank"><span style="color: blue;">policy</span></a> for the management of digital ulcers, published
July 2015. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="972" data-original-width="1296" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4VY0cj51QbWHfM9mFXcuBXi9ppCQEXbA35n83CkdIyyDAWTa-rmgZH-td44OWPwfudylGWRlMJxbjfitZJ6idRZSLboOt2aGX_G82JXX-n8RtmWoIzOe3VqCYuugqO3w5a3HlxyS6TFU/s400/NW+RF+PRAI+28.3.18.jpg" style="margin-left: auto; margin-right: auto;" width="400" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Fellow patient Miss Universe, me, Christine and Lauren from NIHR team </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></td></tr>
</tbody></table>
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Due to the systemic involvement of my diffuse
scleroderma, I am known to many of the different medical specialities included
within the NHS umbrella. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For optimum best practice and care, a medical ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ is paramount, with an expert specialist as the clinical lead. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly grateful for my medical ‘dream team’,
made possible and available to me, by the world class leading healthcare
system, the NHS. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much recommend for any patient to take part in a <a href="https://sclerodermanews.com/clinical-trial/" target="_blank"><span style="color: blue;">clinical trial</span></a> run by a center of excellence. </span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Living the dream,
scleroderma style.<span style="mso-spacerun: yes;"> </span> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">For latest updates follow: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="color: blue;">Raynauds Scleroderma Awareness Global Patients</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld
#RaynaudsFreeWorld </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Living the dream, scleroderma style. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical research at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit, The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
research purposes <b>only</b>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">No wages or admin costs. Thank You.</span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>#SclerodermaFreeWorld
#RaynaudsFreeWorld</b></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An edited version of this article, Click <a href="https://sclerodermanews.com/2018/08/01/get-involved-in-medical-research-take-part-raise-awareness/" target="_blank"><span style="color: blue;">here</span></a>, was published in my <a href="https://sclerodermanews.com/category/blog/" target="_blank"><span style="color: blue;">Column</span></a> with Scleroderma News. August 2018. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<img border="0" data-original-height="972" data-original-width="715" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRM06draEoXLKj9NBtLV8HMAyqylt-dgZZJf1LhxBsjDRX7XM9TAKAkrDDczQdWKWTfOCGltb0y2_2Gxd7Bt-xnFAZiY0_2V26luHLSw4oLaZvvv-9hWfbcgT-rW9tEz4HSXAy1kvXyyg/s320/NW+NIHR+Rare+Disease+Day+20.jpg" width="235" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_MnBuZr_Can3fqsFFJoG_-2rQG2s_JB4jJiX1Nmyeop3Y-o96LwSMSsNg60Ct3rTnXvTjuRYOAXhphOknAMRPYVquB8ITsYXWGC6NaRACcdwQJjBD-s6eTaOc91FWbRkou_QTkn-7tU/s400/Westminster-20160302-NWeskimo.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><div class="MsoNoSpacing" style="text-align: center;">
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical Research - Get involved: Take Part, Raise Awareness </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-54831492722448838772018-09-28T01:54:00.002-07:002020-03-01T13:40:51.203-08:00Happy 70th Birthday to the NHS. Thank You, for keeping me alive. Raynaud's, Scleroderma: Rare Autoimmune Disease.<div style="text-align: center;">
<img border="0" data-original-height="771" data-original-width="1100" height="448" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheHZsA7vUKRmqNlwgossKjM9qhTLOhpLZeyyXVQuxIMEqWn83Gwtg8pOJy6zypH4EgUL0zpeeslZANfJTQJQrdqlDczzo_Q8CzwUN39k665IGS_hh3F932BoPe-hFTwTGt8b7p2l5JBb0/s640/Happy+Birthday+NHS.jpg" width="640" /><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Happy 70th Birthday to the NHS. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Happy 70<sup>th</sup> Birthday to the NHS. Thank You, for keeping me alive.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">On the 5<sup>th</sup> July 2018, over here in
the UK, the National Health Service (NHS), celebrated its 70<sup>th</sup> year
from when it was started, by the then Health Secretary, Nye Bevan. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">‘For the first time, hospitals, doctors,
nurses, pharmacists, opticians and dentists were brought together under one
umbrella to provide services for free at the point of delivery’. <a href="https://www.nhs70.nhs.uk/about/nhs-history/" target="_blank"><span style="color: blue;">History</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the NHS for keeping
me alive, and, for the excellent standard of care, which I continue to receive.
</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I truly believe that without the NHS, I would
not have survived the aggressive onset and progression of disease which I experienced
during my diagnosis, and the following years, until my disease activity became
stable. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMDf5_EZJkgMtyfVjDzTudqRg_C8nZi1_IYLGAQ1io7r9qZsyxodH1d653PugZEFKFZM8iS_lZd-OH9KrAELSUYVcGmYKLe_zvCTaoUPgI2NQVbFTUGhfj7DIJeDGbP3qLQWZTtMRKquY/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The Royal Free Hospital, 27.9.17</span></td></tr>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Furthermore, I remain overjoyed that my ‘<a href="http://blog.raynaudsscleroderma.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue;">skin is cured from scleroderma</span></a>’, having not been able to stretch my arms, in 1997,
due to the extreme skin tightness. <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">However, my daily reality is that it is a full
time job for me to manage my symptoms. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Which, even on the hottest of summer
days, brings along many challenges, as well as, Raynaud’s attacks, due to any temperature
decrease, regardless of the resulting temperature being ‘warm’. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1063" data-original-width="666" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCXxvJSGkBKu3yjqnRyA-d0CHunJPDbRLUB6pQliCtXjm3kWxgpjJXYHQKf-X1rrJVbWb8ysH9yq1sCRWKZJIj3lcgpE0L4WTVHqUgXTBqoSOctcpGoJs8NyMMkLaVCV1DuyufBRC2O2k/s400/NW+-+BEACH+2013.jpg" style="margin-left: auto; margin-right: auto;" width="250" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Hottest day of 2013</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thankfully, my symptoms are currently stable. I
have regular monitoring appointments. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">These include <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/annual-check-up-mot-of-long-term.html" target="_blank"><span style="color: blue;">annual heart and lung tests</span></a>. which are carried out at my <a href="https://www.nhs.uk/Services/Trusts/Overview/DefaultView.aspx?id=1275" target="_blank"><span style="color: blue;">local hospital</span></a>, here in Southport. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am now living with the damage which, the disease at its most active, caused. <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Ultimately, I know that I am a lucky
scleroderma survivor. Even though, the disease has removed many facets of my
life which I enjoyed, as well as, forcing my inner ‘Bond Girl’ to abscond into
oblivion.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">However, due to my early-ish diagnosis, followed
up by the world class care I received, and, continue to receive from the
Scleroderma Unit at The Royal Free Hospital, combined with my <a href="https://www.nhs.uk/Services/Trusts/Overview/DefaultView.aspx?id=1275" target="_blank"><span style="color: blue;">local NHS providers</span></a>, here I am, living the dream as a ‘scleroderma parrot’- obsessed with
the dream of a Scleroderma Free World, along with a Raynaud’s Free World, becoming
a reality.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My experience prompted me to profile patients
from around the world, for my <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">Scleroderma Awareness Month</span></a> 2017 and 2018
campaigns. <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/global-patient-profiles-index-june.html" target="_blank"><span style="color: blue;">INDEX</span></a>. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have detailed more about my patient experience
and journey, on <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/nicola-whitehill-uk-scleroderma.html" target="_blank"><span style="color: blue;">Day 12</span></a> of my global patient profiles campaign, for Scleroderma
Awareness Month 2018. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am extremely grateful to <b style="mso-bidi-font-weight: normal;">all</b> of the patients who have kindly shared their experience for
awareness purposes, as well as, I owe huge thanks to the families of the
patients whom, sadly, have died from the disease. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The conclusions of which, showed that for </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnuh3-5KpSuPK72Q3o2cRyhlDG0_hbU4cM8bLsXzTH5dljZ4DRQbJ18jTnN5oYI2xVN27PZ0m1NgmgFKokbbmx9_I-EdgLg0jO8p-XfIVJKF8QuSS9Nco0wX1Y3qJzD_iVKmChflsdxbw/s640/2016+Day+30.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Where, investment in medical research is
crucial, to improve the day to day reality, as well as, the long term outlook
for the entire global scleroderma community. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although as scleroderma patients we are relatively
few in number, 2.5 million worldwide, the small sample of patients included
within my global patients profile campaign show that, there are many <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">unmet clinical needs</span></a>, which patients have in common: </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">CALCINOSIS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuo6EGSJjlzpweA4znTP5xwPvCAipTlNJWYwSsOgUfJugJbQpZ9LFMxXm-KThqxeOYEgy71HeoCdAScWOSSdDMUInj5427rtTPSnsyGYSjDv4s-w2qT6sboZITqRvQqfphOcbhCYEnet8/s320/2018+Gum+Unmet+Need.jpg" width="320" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GUM RECESSION, TOOTH
EXTRACTS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieNxB-5mQJ9sehwl82_fNpyh_rcVe1ndYkMylDZ_ETRLjByZ8CW1x4Fjd_m6A8pMZQkqIJFlQQ2xSpTOwcbWo9OxObXOlYrCAVE9zTY9IB4I4z7wjMaPXTFxg483jI6xkhYPsakt3Lwt4/s320/2018+Ulcers+unmet+clinical+need.jpg" width="320" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SOFT TISSUE, ULCERS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">TELANGIECTASIA,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SCLERODACTYL HANDS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">INVISIBLE
DISABILITY, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/invisible-disability-unmet-clinical.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqfI8y4oxjuVGBt4-QGMEVKpRegmdu_wNIwKZYtvlpg3ZYyFoqJcpOGFHsk7JXomEtYKfucebSFoVmT3feaTTdb7caWS628-YcygBHXyD7j8G9PR4j7YB3NSNA99CW2kIUsCM_Kyf3QwM/s320/2018+Raynaud%2527s+Unmet+Need.jpg" width="320" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">RAYNAUD'S, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GASTROINTESTINAL,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although these unmet needs are not immediately
life threatening, they cause havoc with the day to day quality of each patient’s
life. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">investment</span></a> in medical research will most certainly
<b>improve</b> the currently ‘soul destroying’ reality, these unmet clinical needs bring.
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In 2015, I was honoured to become a patient voice
on the NHS England <a href="https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a09/" target="_blank"><span style="color: blue;">advisory group</span></a> for Specialised Rheumatology. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In this role, I am totally blown away by the
commitment and dedication shown by the medics involved, to improving the
service which the NHS has to offer in this medical speciality. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I feel particularly honoured to have been a patient
voice, on the NHS England <a href="https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/10/a13pb-sildenafil-bosentan-oct15.pdf" target="_blank"><span style="color: blue;">policy</span></a> for the management of digital ulcers, published
July 2015. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="972" data-original-width="1296" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4VY0cj51QbWHfM9mFXcuBXi9ppCQEXbA35n83CkdIyyDAWTa-rmgZH-td44OWPwfudylGWRlMJxbjfitZJ6idRZSLboOt2aGX_G82JXX-n8RtmWoIzOe3VqCYuugqO3w5a3HlxyS6TFU/s400/NW+RF+PRAI+28.3.18.jpg" style="margin-left: auto; margin-right: auto;" width="400" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Fellow patient Miss Universe, me, Christine and Lauren from NIHR team</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am also very honoured to have become a <a href="https://www.nihr.ac.uk/news/nicola-whitehill-becoming-a-patient-research-ambassador-was-a-natural-next-step/8075" target="_blank"><span style="color: blue;">Patient Research Ambassador</span></a> for the National Institute of Health Research, the research side to
the NHS. <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">Video</span></a>. </span><br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Di7IuS88bKI/0.jpg" src="https://www.youtube.com/embed/Di7IuS88bKI?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Due to the systemic involvement of my diffuse
scleroderma, I am known to many of the different medical specialities included
within the NHS umbrella. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For optimum best practice and care, a medical ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ is paramount, with an expert specialist as the clinical lead. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly grateful for my medical ‘dream team’,
made possible and available to me, by the world class leading healthcare
system, the NHS. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="528" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNcK9K8Bieh-YaiJn_xcMSQhzpxD6wPTF8W7NMHs0RYMkEoBuBuF9TMMcEFhq4UgpONgVkr-b4GhCV7W7zYoNs2Mhrg5iK25j5nPl4rPgRaT9W8EdSbV6Qc8m0PgL7vmngYQ8ZfDboKNg/s400/NW+%252B+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="220" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Denton and I, Sept 2017</span></td><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></td><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></td><td class="tr-caption" style="text-align: center;"><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMDhOowqeb0J6aUJjdh7PgzTt0kwwxtFefqqd8bpWdz9ZPR7ouk7Ps20i69hbLPtpDQtF_n3b2ITkul6TBjMVZsYBeayuM-fIxCMgJnJr-UsK4nKWY8xNAkvxolg1yMyLD8nMVohIaBY0/s400/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Dr Kevin Howell (Raynaud's world trailblazer) </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtuZGaWBvmfjhg5tH_jlHtUKzb_cl5O0W5WvAsyHm51Edw5RR9uklrk-oB6WGqmgoaWoaHBn4v8CM64j7-SSIxJwDcmFfILReFj_DkZ0ePcwyKNKCwsbHd5h5mlMQBxBXv-jZq9WSNACg/s400/NW+%252B+Dr+Sykes.jpg" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Dr Sykes, Consultant Rheumatologist Southport Hospital</span></td><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">, August 2017.</span></td></tr>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8aeI3yY-h-skbqBRSSy5Qca1o9jOn_5V3YHCYd2gHkOfXE2lQNVFaZNAzFM-MTZcIpfOQUHK1JESKzs37Xa9KoC0WtV5y1p92SAnE0Twr47LL7kjV48voPDIbxa4micBRMn6mquQh0js/s400/NW+%252B+Andrea.jpg" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Andrea, Southport Hospital Pharmacist, August 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Living the dream, scleroderma style. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical research at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit, The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An edited version of this article, Click <a href="https://sclerodermanews.com/2018/07/18/scleroderma-happy-70th-birthday-nhs/" target="_blank"><span style="color: blue;">here</span></a>, was published in my <a href="https://sclerodermanews.com/category/blog/" target="_blank"><span style="color: blue;">Column</span></a> with Scleroderma News. July 2018. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<br /></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><div class="MsoNoSpacing" style="text-align: center;">
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<img border="0" data-original-height="1040" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQecKgdOZoiUN5MztR7PLe42WtewQ7eSWfhKvxjW5KNChodxF9bfcOa8bwRUUQM-BmNTNdQWOs4gD3Yy9ViPtabwmYacLWCB-Jb-IHa-JhyqEuzfnPgTP2NWpieQehH5nS8Yp_8XjlgC_f/s400/2019+Feels+like.jpg" width="276" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ZuswSyFmIIiUZ8QSx5VDCl1jwi_i-7CDHPBfNh5Ma-dAy-aeU6Qw2QJ0p-Y3iJVK3AcBPUV44Fte6LauyuS0kmmOKgJYydhHVXC-R6gYnr9TkeCw5lXlT-RK4vmsh3zlXbAyPQ-5rgU/s320/NW+%252B+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="176" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlF_fkeNVYEdn5oyo9ehKwMzPQJqejKGyDfK8XNiR31BdTfKqHdL6CgKxo2vu6dOyTWvDJ8UhcnHdsBI6iaEGKhnmopVL_oyfq5HYPIElfFu4Othx5mcoLUuxuU09QxwVyJVoW9on9qVnA/s320/NW+Prof+D+19.6.19.jpg" style="margin-left: auto; margin-right: auto;" width="176" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span></span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Happy 70th Birthday to the NHS. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-89934767967481602812018-07-02T00:02:00.000-07:002020-03-09T13:05:12.226-07:00GLOBAL PATIENT PROFILES INDEX. June Scleroderma Awareness Month 2018. Scleroderma, Raynaud's, Autoimmune Rare Disease.<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg21a0Sc6RzvC7RKosjzpmY4131_DlLqDz5t_MLFfbeDEh0KK9KVdydDdt3FjnWJktHWtNcBgXHX5DdpepluNrAu3f5iQW__jjaBNpQG_uzEHuJs7GqhGWpjMEy3EDW6JKgSLgl1QWRQ0/s640/2018+Index.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">June Scleroderma Awareness Month
2018.</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GLOBAL PATIENT PROFILES INDEX</span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/raynaudsunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://sclerodermarf.blogspot.com/" target="_blank"><span style="color: blue;">sclerodermarf.blogspot.com</span></a> </span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsrf.blogspot.com/" target="_blank"><span style="color: blue;">raynaudsrf.blogspot.com</span></a></span></span></span></span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/alice-martins-correia-switzerland-june.html" target="_blank"><span style="color: blue;">Alice</span></a> Martins Correia,
Switzerland. </span><br />
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">June
1st</span></b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> is Alice's double lung transplant birthday - <b>6
YEARS</b> - </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Many Congratulations to Alice! </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/jacob-vidal-davila-usa-june-scleroderma.html" target="_blank"><span style="color: blue;">Jacob</span></a> Vidal Davila, USA.</span></div>
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<img border="0" data-original-height="1184" data-original-width="888" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-Eq8I7YotGd-ExXPTP0w71vL3LL9NWUe4_mkZ0Y5DfNa_iTI-MRo7XmJlPT76ToIgfI4U9CIHhkhdBIhBd5JQpxmrP3nCcJyzPmTBvQrtb19pqz6JK3gaj9m7ivo0EIzo9IAh7u8tvzo/s200/18870399_10213410810367147_593329033_o.jpg" width="150" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/haslina-wannor-singapore-june.html" target="_blank"><span style="color: blue;">Haslina</span></a> Wannor, Singapore. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/sarah-lloyd-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">Sarah</span></a> Lloyd, UK. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/dr-susan-nyanzi-usa-scleroderma.html" target="_blank"><span style="color: blue;">Dr Susan</span></a>
Nyanzi, USA. </span></div>
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<span style="mso-bookmark: _Hlk517875502;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/deani-baillie-uk-scleroderma-awareness.html" target="_blank"><span style="color: blue;">Deani</span></a> Baillie, UK.</span></span></div>
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<span style="mso-bookmark: _Hlk517875502;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/janet-swerbenski-usa-scleroderma.html" target="_blank"><span style="color: blue;">Janet</span></a> Swerbenski, USA.</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/vanessa-cummings-uk-scleroderma.html" target="_blank"><span style="color: blue;">Vanessa</span></a> Cummings, UK. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/debbie-king-canada-scleroderma.html" target="_blank"><span style="color: blue;">Debbie</span></a> King, Canada. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/chris-milan-uk-rip-10659-4317-patient.html" target="_blank"><span style="color: blue;">Chris</span></a> Milan, UK. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">RIP 10/6/59 -
4/3/17.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/misty-rushing-usa-scleroderma-awareness.html" target="_blank"><span style="color: blue;">Misty</span></a> Rushing, USA. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/nicola-whitehill-uk-scleroderma.html" target="_blank"><span style="color: blue;">Nicola</span></a>
Whitehill, UK. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/margie-kugler-australia-scleroderma.html" target="_blank"><span style="color: blue;">Margie</span></a> Kugler,
Australia. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/denise-holmes-uk-scleroderma-awareness.html" target="_blank"><span style="color: blue;">Denise</span></a> Holmes, UK </span></div>
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<img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinE__VFIuXrM5IOnAsQ6ZPTMc3BHUvMlpDTWsWeizlViELo65tTM73ynq6Qn3-_4pubWm6FQaYqrpG47ugdRWQhAyqDHApu8505YxwUblbTbCHNfDbZD1pPLCfNf8eDc06QXOHX2kD3to/s200/4th+july+2015.jpg" width="200" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/roy-louden-usa-scleroderma-awareness.html" target="_blank"><span style="color: blue;">Roy</span></a> Louden, USA.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/jen-wells-usa-scleroderma-awareness.html" target="_blank"><span style="color: blue;">Jen</span></a> Wells, USA. </span></div>
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<img border="0" data-original-height="1112" data-original-width="672" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhWApUkIpYDqa2IqCMUoUoTcJM7OQlxf53fXmWccm2DnoDi1n3yuOmBLPGhxxmAOpgn8zZveG30rA3l6VPqtc0z6WIQCwMpgGMiPB4gXnNrgcUgsTZULhmy4xfhHLDVF6cnqHAz7OjBlo/s200/20160731_184002-1-1.jpg" width="120" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/helena-gaspar-portugal-scleroderma.html" target="_blank"><span style="color: blue;">Helena</span></a> Gaspar,
Portugal.</span></div>
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<img border="0" data-original-height="575" data-original-width="1024" height="111" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8emE1qheFIPb0B7bn5jOjeHjwnQEFTisNzfEU7UJWdOE4QHpq7bjxnDkYZOv81JkqSZTgaUHEO69S0ZBr2NFX5XCLA8mp6-Txe_zs8iNqCo1VCLwkNo2c8HNzBigSqo-zziVC0Luoz1I/s200/received_10210815211487730%25281%2529.jpeg" width="200" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/christine-wilson-uk-scleroderma.html" target="_blank"><span style="color: blue;">Christine</span></a> Wilson, UK.
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/sheryl-bishop-usa-scleroderma-awareness.html" target="_blank"><span style="color: blue;">Sheryl</span></a> Bishop, USA. </span></div>
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<img border="0" data-original-height="1184" data-original-width="1087" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoLWqlyfY3SVpuIm982cJOmbDPkjBZTUz9cpnTvNPDl9Zk-VjcAlX2s-fT_USOeh7mGaDXTFzrzTXPAI_SJT3qxI9ZM1bI_7jfigH0GDyo9emhQ8c3gd1TOmLVw0QQuXT5gop9BLxFQ8Y/s200/18676729_10158729286115313_2112902969_o.jpg" width="183" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/jennifer-moss-uk-scleroderma-awareness.html" target="_blank"><span style="color: blue;">Jennifer</span></a> Moss, UK</span></div>
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<img border="0" data-original-height="960" data-original-width="960" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWFXmOolozQuq83-R-6jQnZCmregO3rncF6jgdDzuLTP5NWsb3OUjfRsU8HsBKCuQjtxRisQwe7IlOe4zwh50tbhI80ehOJSyXTDsM-IlYfrKnTciYE39leI8B0K8R4NjdJObTIoGdDno/s200/14225466_10154011482943458_4888587688774740865_n.jpg" width="200" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/diwakar-rawat-india-scleroderma.html" target="_blank"><span style="color: blue;">Diwakar</span></a> Rawat,
India. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/sharon-harris-uk-scleroderma-awareness.html" target="_blank"><span style="color: blue;">Sharon</span></a> Harris, UK </span></div>
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<img border="0" data-original-height="844" data-original-width="516" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjrX4R97Vqb8LLWmBOvzW57zqG9dClTClA59BsCM7uZ-OEi-m5Uah-mc1HFXmckNrEmesIuLIqO7zUyqI6PVPYsBj6kLmcg5Cw9IhBggwCRSQDzBySF-nzjZ0y-6Zdsuvh7PLwsZBhWAg/s200/Lori+-+Google.jpg" width="121" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/lori-pierce-usa-scleroderma-awareness.html" target="_blank"><span style="color: blue;">Lori</span></a> Pierce, USA.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/sarah-jatto-uk-scleroderma-awareness.html" target="_blank"><span style="color: blue;">Sarah</span></a> Jatto, UK.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/patti-pascucci-usa-scleroderma.html" target="_blank"><span style="color: blue;">Patti</span></a> Pascucci, USA.
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/jan-petrie-procter-uk-scleroderma.html" target="_blank"><span style="color: blue;">Jan</span></a> Petrie Procter,
UK.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/kelli-schrag-usa-scleroderma-awareness.html" target="_blank"><span style="color: blue;">Kelli</span></a> Schrag, USA. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<img border="0" data-original-height="994" data-original-width="560" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVVP8BNNYZfmeX5zWEyjMGeLSdwJEjZ-Lpo014W1GmNTaQa6djQy0NNRBFZnY7zp81Uz0FF4X9Hk5r-CiZ8-R1HSmsAJPQg1ve_OoSt64eQLxUz62YN3U3qfrdZ4kLqFyai13jFse-T5Q/s200/Kev+East+and+Debby.jpg" width="112" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/kevin-east-rip-5th-jan-1967-7th-jan.html" target="_blank"><span style="color: blue;">Kevin</span></a> East, UK. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">RIP 5th Jan 1967 - 7th Jan
2016. </span></div>
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<img border="0" data-original-height="960" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1C98ik43xwtHIGaPekeQeCBp0MLwOQqqXNEDAyqiRhnEsSbuvRZmyfU603MgDvQxrIWGFRVHfTe08eiehH-FLcfhiLyqUxWiUIuvMcbYZB60aVu2BFMU3RNMz7jVHx25YMGY75iGo_dE/s320/Wyatt+June+2018+car.jpg" width="320" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2018/06/wyatt-warrior-usa-world-scleroderma-day.html" target="_blank"><span style="color: blue;">Wyatt the Warrior</span></a>, USA. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">WORLD SCLERODERMA
DAY. 29<sup>th</sup> June. </span></div>
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<img border="0" data-original-height="720" data-original-width="960" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCrSOD6n76osqFz-ADeT9-dTKSIVBeav8dr3SQ9KUrw3W5i8RLBJc2b1kKmyKH9T05arv9XiEi7EyvCfUrwxbi2AFWTGdd-qV4owMGRiOVX0626VGtbqVEfBGrtndp8_x56Q31aVNO_RY/s400/2018+WSD+TY+Prof+Denton.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">WORLD SCLERODERMA DAY</span></a>. 29<sup>th</sup> June
2018.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thank You to Prof Denton </span></div>
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<img border="0" data-original-height="720" data-original-width="960" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTQGRzLv338JJn-8BkTe54QYunNCosvY0nZIbhoU1YZAeqKnqay4JfiouHRTiBcmycO7WCGHncJSfxNYtq684JGWrlMMHSDl0qgwopyH4dy-iQZq3ZTw_E9UA5eSZx6owUMYGYTkOKHH0/s400/WSD+2018+April.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/anne-mawdsley-uk-scleroderma-awareness.html" target="_blank"><span style="color: blue;">Anne</span></a> Mawdsley, UK. <span style="mso-bidi-font-weight: bold;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-bidi-font-weight: bold;">RIP 31.5.42 – 12.10.2014</span></span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I owe huge thanks to ALL of the patients who took part in the Scleroderma Awareness
Month 2017, 2018, Global Patient Profiles Campaign: Research. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Every patient’s
story brought tears rolling down my face, as I put the campaign together. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Which, had not been
envisaged by me, whilst the idea of the campaign was in its infancy. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My
Sjogren’s overlap symptoms were on strike for a few/most days during June Scleroderma
Awareness Month! </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Living with this
diagnosis makes you dig deep into finding out who you really are, and what /
who, is truly really important to you. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As Bob Marley sang, ‘You never know how
strong you are, until you have to be’. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I hope that this
Campaign has been of interest, not just from an educational perspective but
also, from a supportive element to fellow patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The conclusions of which, showed that, for </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><br /></span></span></span></div>
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</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
<br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnuh3-5KpSuPK72Q3o2cRyhlDG0_hbU4cM8bLsXzTH5dljZ4DRQbJ18jTnN5oYI2xVN27PZ0m1NgmgFKokbbmx9_I-EdgLg0jO8p-XfIVJKF8QuSS9Nco0wX1Y3qJzD_iVKmChflsdxbw/s400/2016+Day+30.jpg" width="400" /></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">(expert specialist as the clinical lead).</span></span> </span></span></span></span></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><br /></span></span></div>
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</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Where, investment in medical research is
crucial, to improve the day to day reality, as well as, the long term outlook
for the entire global scleroderma community. </span></div>
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/l_u1ZUo83YM/0.jpg" src="https://www.youtube.com/embed/l_u1ZUo83YM?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although as scleroderma patients we are relatively
few in number, 2.5 million worldwide, the small sample of patients included
within my global patients profile campaign show that, there are many <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">unmet clinical needs</span></a>, which patients have in common: </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
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<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO3d9iXIbXQ2ciAZUM7UPYW0nPaIJ4L1oldgch31uH1HlVNXhC1uCXzm-pC_ONNb0crU-2A7_LaIRUVb1x_W6JPqgR7X9GGdP0fCG_iibE6X9hLOhUEDOoX8J0WJvM0mCOVsGLAqoyzJg/s320/2018+Calcinosis+Unmet+Need.jpg" width="320" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">CALCINOSIS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuo6EGSJjlzpweA4znTP5xwPvCAipTlNJWYwSsOgUfJugJbQpZ9LFMxXm-KThqxeOYEgy71HeoCdAScWOSSdDMUInj5427rtTPSnsyGYSjDv4s-w2qT6sboZITqRvQqfphOcbhCYEnet8/s320/2018+Gum+Unmet+Need.jpg" width="320" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GUM RECESSION, TOOTH
EXTRACTS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieNxB-5mQJ9sehwl82_fNpyh_rcVe1ndYkMylDZ_ETRLjByZ8CW1x4Fjd_m6A8pMZQkqIJFlQQ2xSpTOwcbWo9OxObXOlYrCAVE9zTY9IB4I4z7wjMaPXTFxg483jI6xkhYPsakt3Lwt4/s320/2018+Ulcers+unmet+clinical+need.jpg" width="320" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SOFT TISSUE, ULCERS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
</div>
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<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-TJPQEzaHAtlZgb8BmSaWb6EnN4IC4A2bhLA0iYXQ28go5PDO-tSHuFUVj3p7ekiDKqnub2sfkQJJ5xOjEn_ZgIla7QtCD3UOhNqS_A8pzgamlYicOSDcaKiKA2EaE5GBD_FO0KsZcSM/s320/2018+Telangiectasia+Unmet+Need.jpg" width="320" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">TELANGIECTASIA,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SCLERODACTYL HANDS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">INVISIBLE
DISABILITY, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/invisible-disability-unmet-clinical.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">RAYNAUD'S, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="720" data-original-width="1040" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiHGiwrSjUYB6Ogajj1OAVl3ARAKamk-2kwau3BQBaJ-Wpnu0jc64Qup4VFGjG5QcQ5e9cqPk26V5v8lbFFZv3b4N6tEKJz0HKyVLWy-IV46iXM-wOuskTUhUVRJNFIR34ZI1cgjuTtkM/s320/2018+Gastro+Intestinal+Unmet+Need.jpg" width="320" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GASTROINTESTINAL,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although these unmet needs are not immediately
life threatening, they cause havoc with the day to day quality of each patient’s
life. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
</div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">An <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">investment</span></a> in medical research will most certainly
<b>improve</b> the currently ‘soul destroying’ reality, these unmet clinical needs bring. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">June 2018.</span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwBbZTcEq4o2VEIk5D7uJb1RL2HwY8T2fT6adnFRt30Nf5sMnoknDPCXbIkXjjNfBZ9VSJmskSoj-VwkuSvIiPJuF1DA2Phs2pIqQchWhoT2WaOB9tyrzrpN6oMMC-ogD7vi3EtIT7Wg9Z/s640/SURF+Family+Day+2020.jpg" width="640" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<br /></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">del Galdo</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
</div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
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<img border="0" data-original-height="972" data-original-width="715" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRM06draEoXLKj9NBtLV8HMAyqylt-dgZZJf1LhxBsjDRX7XM9TAKAkrDDczQdWKWTfOCGltb0y2_2Gxd7Bt-xnFAZiY0_2V26luHLSw4oLaZvvv-9hWfbcgT-rW9tEz4HSXAy1kvXyyg/s320/NW+NIHR+Rare+Disease+Day+20.jpg" width="235" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br />
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<img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_MnBuZr_Can3fqsFFJoG_-2rQG2s_JB4jJiX1Nmyeop3Y-o96LwSMSsNg60Ct3rTnXvTjuRYOAXhphOknAMRPYVquB8ITsYXWGC6NaRACcdwQJjBD-s6eTaOc91FWbRkou_QTkn-7tU/s400/Westminster-20160302-NWeskimo.jpg" width="400" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">June 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1440" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnUBiegKi3u4tV3zBbMtw7XhbXAopN07y3uVTE18SmWeI2W5bFQifUHF_qjKZKES19zUxUenwg3r914-PQ-fg847TsRHSrfMftFDbATOWXrduHYcmWt0-RdOssPIqFc0MwN-Qy1UYvkSJO/s640/Chat+mag+16.5.19.jpg" style="margin-left: auto; margin-right: auto;" width="354" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span> </span></span></span></span><br />
<br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">research</span></a> at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit,The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span><br />
<br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click <a href="https://www.royalfreecharity.org/donate/scleroderma-raynauds" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
research purposes <b>only</b>. NO wages or admin costs. Thank You. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">June Scleroderma Awareness Month
2018.</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GLOBAL PATIENT PROFILES INDEX</span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.justgiving.com/fundraising/raynaudsunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/raynaudsunit-royalfree</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#RaynaudsFreeWorld </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://sclerodermarf.blogspot.com/" target="_blank"><span style="color: blue;">sclerodermarf.blogspot.com</span></a> </span></span></span><br />
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-20954266837315654942018-07-01T02:28:00.001-07:002022-05-29T11:05:33.697-07:00Scleroderma Awareness Raising 2018, Medical Research Investment. Scleroderma, Raynaud's, Autoimmune Rare Disease. <div class="separator" style="clear: both; text-align: center;">
<span style="font-family: arial;"><img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHABZiXvd4cg_TrcKXV3-4C-3LpSNo7pDtM5zQbCerJbGdLgPqpDrzfuNyiYmQeRB9obmEFB0cbKvGLP2k1Sie2CgWS4K3c6UOxXPD3Cdw38f3IJBKDm3r6kfxABTseQm-3tbseHl7P7w/s640/2018+Awareness+Raising+and+Medical+Research+Investment.jpg" width="640" /></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 107%;">Scleroderma Awareness Raising 2018 - Medical Research Investment. </span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></a> </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">#RaynaudsFreeWorld
#SclerodermaFreeWorld </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">We are now over half way through our awareness
month of June, culminating with <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">World Scleroderma Day</span></a> on 29<sup>th</sup> June. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTQGRzLv338JJn-8BkTe54QYunNCosvY0nZIbhoU1YZAeqKnqay4JfiouHRTiBcmycO7WCGHncJSfxNYtq684JGWrlMMHSDl0qgwopyH4dy-iQZq3ZTw_E9UA5eSZx6owUMYGYTkOKHH0/s640/WSD+2018+April.jpg" width="640" /></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">As a long term survivor patient of our rare
disease, it has been very exciting for me to see the vibrant 2018 Scleroderma Awareness
Month activity, which is taking place over many social media platforms. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Scleroderma Canada and Toronto have arranged for
several well known buildings and tourist attractions to be lit in teal, over
the course of our awareness month. The highlight being the Niagra Falls on
World Scleroderma Day. This will be streamed live via their Facebook Page.</span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">So far, as is the same every year, in my view, our
Canadian scleroderma friends continue to show the rest of the world, how to
raise awareness, and best of all, get laws changed, for improving patients
lives. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><br /></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">This is why I am obsessed, (if you had not already
noticed, and, I am the first to admit this obsession), with <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/living-dream-being-your-own-raynauds.html" target="_blank"><span style="color: blue;">raising awareness</span></a> about
financial investment in medical research and the ramifications which this poses.
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Not only for discovering the cure and cause,
but also for <b>improving the day to day</b> reality of the rare disease patient’s
life, in the meantime. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">This includes access to innovative medicines
which need to be fast tracked through the regulatory process to ensure maximum
patient benefit. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Time is a luxury for the rare disease patient in general, and
especially so, for the Scleroderma patient. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">An <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">early diagnosis</span></a> is crucial to prevent any
potential life threatening damage. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><br /></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">I am soon to be entering my twenty first year,
since first having heard those life changing words ‘<a href="http://blog.raynaudsscleroderma.co.uk/2017/04/scleroderma-raynauds-rare-disease.html" target="_blank"><span style="color: blue;">You have scleroderma</span></a>’. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><br /></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">I am eternally grateful for the early-ish
diagnosis which I received. Followed by, the outstanding world class care, which, I continue
to receive, at the globally renowned scleroderma unit expert centre. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><br /></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">In December 2018, I will be celebrating my twentieth
year anniversary of being a patient at the unit. I know that I am an extremely
lucky scleroderma patient, in that I am still alive. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><br /></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Albeit, scleroderma has turned my body into
being the real life '<a href="http://blog.raynaudsscleroderma.co.uk/2017/03/living-dream-as-real-life-tin-man.html" target="_blank"><span style="color: blue;">tin man</span></a>'. Forcing me to respect the multi systemic symptoms
and damage caused by the disease, when it was at its most active, 1997 – 2004, thereby,
forcing me to give up <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/scleroderma-raynauds-rare-disease-full.html" target="_blank"><span style="color: blue;">full time work</span></a>. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><br /></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">I remain eternally grateful to Dame Professor
Carol Black and Professor Chris Denton, whose medical expertise and care, most
definitely contributed greatly, to me achieving my personal childhood goal of becoming
a barrister, in 2004. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><br /></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">At the same time, I discontinued my 2g
mycophenolate mofetil daily dose of the previous five years. Within a few
months, I experienced a flare in my symptoms and had to accept that the physical
demands of the role were too much for my scleroderma damaged body. </span><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-spacerun: yes;"> </span></span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><br /></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">I have detailed more about my patient experience
and journey, on <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/nicola-whitehill-uk-scleroderma.html" target="_blank"><span style="color: blue;">Day 12</span></a> of my global patient profiles campaign, for Scleroderma
Awareness Month 2018. </span></span></div><span style="font-family: arial;">
</span><div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: arial;"><br /></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">My personal experience, is the precursor and
reason for me starting my global patient profiles <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">campaign</span></a>, last year. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">I am extremely grateful to <b style="mso-bidi-font-weight: normal;">all</b> of the patients who have kindly shared their experience for
awareness purposes, as well as, I owe huge thanks to the families of the
patients whom, sadly, have died from the disease. <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/index-scleroderma-raynauds-awareness.html" target="_blank"><span style="color: blue;">INDEX</span></a> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Although as scleroderma patients we are relatively
few in number, 2.5 million worldwide, the small sample of patients included within
my global patients profile campaign show that, there are many <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">unmet clinical needs</span></a>, which patients have in common. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Namely: </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">CALCINOSIS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">GUM RECESSION, TOOTH
EXTRACTS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">SOFT TISSUE, ULCERS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">TELANGIECTASIA,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br /></span>
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</span><div class="separator" style="clear: both; text-align: center;"> <div class="separator" style="clear: both; text-align: center;"><img border="0" data-original-height="720" data-original-width="1280" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1KUjYv1vFykrt9GjygB-ju3qVuPBqoUVll6LBDBERV-6LLqtQ3LFLNt9xKgwMaqsBusW7LkKiS0mDX7WQLVRBD6OIpxHZK_2sRYC2ni3FBNFcuQxM9WlWPWq8y5RM1xcA8ob4G-_iJ90VSIRY5GrYtcIbp-y07NVgswzOUvv8TACPQMHLdkVDHPXQ/w320-h180/2018%20Hands.jpg" width="320" /></div><span style="font-family: arial;"><br /></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">SCLERODACTYLY HANDS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">INVISIBLE
DISABILITY, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/invisible-disability-unmet-clinical.html" target="_blank"><span style="color: blue;">here</span></a> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">RAYNAUD'S, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">GASTROINTESTINAL,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Although these unmet needs are not immediately
life threatening, they cause havoc with the day to day quality of each patient’s
life. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">An investment in medical research will most certainly
<b>improve</b> the currently ‘soul destroying’ reality, these unmet clinical needs bring. </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Last week, I celebrated having made another
birthday. Here I am, being spoilt by my lovely, childhood friend, <a href="http://blog.raynaudsscleroderma.co.uk/2017/10/primary-raynauds-dr-libby-wilson.html" target="_blank"><span style="color: blue;">Libby</span></a>, and
for whose continued friendship, love and support, I am eternally grateful. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">The following day, aged 45, I became a Page 3
girl (not a childhood dream, as such). I was delighted that my local paper featured my scleroderma story, along
with my Patient Research Ambassador role. <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">video</span></a>. <span style="mso-spacerun: yes;"> </span></span><br /></span>
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<span style="font-family: arial;"><iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Di7IuS88bKI/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/Di7IuS88bKI?feature=player_embedded" width="320"></iframe> </span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Living the dream,
scleroderma style.<span style="mso-spacerun: yes;"> </span> <span style="mso-spacerun: yes;"> </span></span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Follow: </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><u><span face=""arial" , sans-serif" style="color: blue; font-size: 12pt;"><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="color: blue;">Facebook Page</span></a></span></u><span face=""arial" , sans-serif" style="font-size: 12pt;">: Raynauds
Scleroderma Awareness Global Patients </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Twitter, Instagram, YouTube, Blogger:
@SclerodermaRF @RaynaudsRf </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">#SclerodermaFreeWorld
#RaynaudsFreeWorld </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Please <u><span style="color: blue;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;">DONATE</span></a></span></u> to help fund medical research
at <u><span style="color: blue;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue;">The Scleroderma Unit, The Royal Free Hospital</span></a></span></u>,
London. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">100% of your monies
will be used for medical research purposes <b>only</b>. No wages. Thank You. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">An edited version of this <a href="https://sclerodermanews.com/2018/06/20/scleroderma-awareness-2018-medical-research-investment/" target="_blank"><span style="color: blue;">article</span></a> was published in my <a href="https://sclerodermanews.com/nicolas-scleroderma-blog/" target="_blank"><span style="color: blue;">column</span></a> with Scleroderma News. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">June 2018. </span></span></div><span style="font-family: arial;">
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Scleroderma Family Day
2020</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">25<sup>th</sup>
Anniversary Meeting</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Chair: Professor Chris
Denton</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">PROVISIONAL PROGRAMME</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">del Galdo</span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">from
‘black box’ to ‘positive trials’ </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></span></div>
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<span style="font-family: arial;"><b><span face=""arial" , sans-serif" style="font-size: 12pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span face=""arial" , sans-serif">Sally
Reddecliffe/Adele Dawson</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">To Read My Articles: </span></span></span></div>
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<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></div>
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<span style="font-family: arial;"><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></div>
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<span style="font-family: arial;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvqKimHxQNC8jaPohLnPFdoTazSrJU_hsVwNYyrKQ031sYVYaEYkPFauSAxnwWb2L5oxdDV8umLdBtAoXz7M7P4VqyfuCPYuq99aEv6HELyo0dkUGKB_EArMCE1BeR2ZGGiGXiY5e9yeUH/s640/Rare+Disease+Day+2020.jpg" width="640" /> </span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br /></span>
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<span style="font-family: arial;"><img border="0" data-original-height="400" data-original-width="400" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi39Yjj-5uBweIwIM4pnUMsXtzMGKYU208TMbNjFsYDOsuaWgUAqyTXoFaDpFma5SH1CNXuwyk6GpM8E9ZOagnTiUmOcQ6H5XBVfy8tTnIwm8BBuJVYbhdJS8lV8wvMJW5EVXtAE09viMo/s320/Royal+Free+Radio+25.2.20.jpg" width="320" /></span></div>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"> </span></span></span></span></span></span></span></span></span></span><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><br /></span></span></span></span></span></span></span></span></span></span></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, <a href="https://www.youtube.com/watch?v=PQUH36KvpRc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"> </span></span></span></span></span></span></span></span></span></span><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click <a href="https://local.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-to-those-living-with-rare-diseases/24218?fbclid=IwAR0wm41QeREwlVD9p0JUb-dd-85WLmnxxc8hCeTvnPlGdck3OefuLPPXBQc" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">2017 Rare
Disease Day </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Medical Research</span></a></span><span face=""arial" , sans-serif" style="font-size: 12pt;"> </span><span face=""arial" , sans-serif" style="font-size: 12pt;"> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">2017 Rare
Disease Day </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span face=""arial" , sans-serif"><u><br /></u></span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span><br /></span>
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<span style="font-family: arial;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_MnBuZr_Can3fqsFFJoG_-2rQG2s_JB4jJiX1Nmyeop3Y-o96LwSMSsNg60Ct3rTnXvTjuRYOAXhphOknAMRPYVquB8ITsYXWGC6NaRACcdwQJjBD-s6eTaOc91FWbRkou_QTkn-7tU/s400/Westminster-20160302-NWeskimo.jpg" width="400" /> </span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></span></div>
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<span style="font-family: arial;"><span style="font-size: large;"><b><span face=""arial" , sans-serif" style="color: red; font-size: 12pt;">Medical
Research</span></b></span><br /></span>
<span style="font-family: arial;"><span style="font-size: large;"><b><span face=""arial" , sans-serif" style="color: red; font-size: 12pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span face=""arial" , sans-serif" style="line-height: 101%;">, </span></b></span></span><br /></span>
<span style="font-family: arial;"><span style="font-size: small;"><b><span face=""arial" , sans-serif" style="line-height: 101%;">for the illumination of </span></b></span><br /></span>
<span style="font-family: arial;"><span style="font-size: small;"><b><span face=""arial" , sans-serif" style="line-height: 101%;">the rare disease
patients’ plight.</span></b></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span face=""arial" , sans-serif" style="font-size: 12pt;"> overall. </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">For </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">optimum
patient care, 3 hallmarks preside: </span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></span></div>
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<span style="font-family: arial;"><img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnuh3-5KpSuPK72Q3o2cRyhlDG0_hbU4cM8bLsXzTH5dljZ4DRQbJ18jTnN5oYI2xVN27PZ0m1NgmgFKokbbmx9_I-EdgLg0jO8p-XfIVJKF8QuSS9Nco0wX1Y3qJzD_iVKmChflsdxbw/s400/2016+Day+30.jpg" width="400" /></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="color: blue;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="color: blue;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="color: black;"><span face=""arial" , sans-serif" style="font-size: 12pt;">(expert specialist as the clinical lead).</span></span> </span></span></span></span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br /></span>
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<span style="font-family: arial;"><img border="0" data-original-height="1040" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQecKgdOZoiUN5MztR7PLe42WtewQ7eSWfhKvxjW5KNChodxF9bfcOa8bwRUUQM-BmNTNdQWOs4gD3Yy9ViPtabwmYacLWCB-Jb-IHa-JhyqEuzfnPgTP2NWpieQehH5nS8Yp_8XjlgC_f/s400/2019+Feels+like.jpg" width="276" /></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">To read my articles: </span> </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-spacerun: yes;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-spacerun: yes;"><span face=""arial" , sans-serif" style="font-size: 12pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span face=""arial" , sans-serif" style="font-size: 12pt;"> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">The Importance of Medical Research and Awareness to the </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span face=""arial" , sans-serif" style="font-size: 12pt;"> </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><b>SCLERODERMA:</b></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Importance of an early diagnosis, Click </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span face=""arial" , sans-serif" style="font-size: 12pt;"> <span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Taking Part in Clinical Research Trials, Click </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span face=""arial" , sans-serif" style="font-size: 12pt;"> <span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Expert Specialist Centres, Click </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span face=""arial" , sans-serif" style="font-size: 12pt;"> <span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"><br /></span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">My Skin is Cured from Scleroderma, Click </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span face=""arial" , sans-serif" style="font-size: 12pt;"> <span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span face=""arial" , sans-serif" style="font-size: 12pt;"> <span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Fatigue, Click </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span face=""arial" , sans-serif" style="font-size: 12pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Mobility, Click </span><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span face=""arial" , sans-serif" style="font-size: 12pt;"> </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-spacerun: yes;"><span face=""arial" , "helvetica" , sans-serif">Diet <span face=""arial" , "helvetica" , sans-serif">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></span>
<span style="font-family: arial;"><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></span>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: arial;"><iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" width="320"></iframe></span></div>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></span>
<span style="font-family: arial;"><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></span>
<span style="font-family: arial;"><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></span>
<span style="font-family: arial;"><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></span></div>
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<tr><td style="text-align: center;"><span style="font-family: arial;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: arial;"><span style="font-size: xx-small;"><span face=""arial" , "helvetica" , sans-serif">Sept 2017</span></span></span></td></tr>
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<tr><td style="text-align: center;"><span style="font-family: arial;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ZuswSyFmIIiUZ8QSx5VDCl1jwi_i-7CDHPBfNh5Ma-dAy-aeU6Qw2QJ0p-Y3iJVK3AcBPUV44Fte6LauyuS0kmmOKgJYydhHVXC-R6gYnr9TkeCw5lXlT-RK4vmsh3zlXbAyPQ-5rgU/s320/NW+%252B+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="176" /></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: arial;"><span face=""arial" , "helvetica" , sans-serif">Prof Chris Denton and I, Sept 2017</span></span></td></tr>
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<tr><td style="text-align: center;"><span style="font-family: arial;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlF_fkeNVYEdn5oyo9ehKwMzPQJqejKGyDfK8XNiR31BdTfKqHdL6CgKxo2vu6dOyTWvDJ8UhcnHdsBI6iaEGKhnmopVL_oyfq5HYPIElfFu4Othx5mcoLUuxuU09QxwVyJVoW9on9qVnA/s320/NW+Prof+D+19.6.19.jpg" style="margin-left: auto; margin-right: auto;" width="176" /></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: arial;"><span face="Arial, Helvetica, sans-serif">June 2019</span></span></td></tr>
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<tr><td style="text-align: center;"><span style="font-family: arial;"><img border="0" data-original-height="960" data-original-width="839" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgM2h7gNJSuUXWSnBQ5GTcmuKOOIDWVQVMUdGjVfZtGlthhw8apD4uubAgbtdsziUCB1aiLi2-jVJuEq16cmFqcxYAQnHlhXoGud9PkfHxN4fLui3iprdzq0JZgMIIG5jfRvssW8tSShoU/s320/NW+RF+19.6.19+heart.jpg" style="margin-left: auto; margin-right: auto;" width="279" /></span></td></tr>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;"> </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br /></span>
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<span style="font-family: arial;"><img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </span></div>
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<tr><td style="text-align: center;"><span style="font-family: arial;"><img border="0" data-original-height="1440" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnUBiegKi3u4tV3zBbMtw7XhbXAopN07y3uVTE18SmWeI2W5bFQifUHF_qjKZKES19zUxUenwg3r914-PQ-fg847TsRHSrfMftFDbATOWXrduHYcmWt0-RdOssPIqFc0MwN-Qy1UYvkSJO/s640/Chat+mag+16.5.19.jpg" style="margin-left: auto; margin-right: auto;" width="354" /></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: arial;"><span face="Arial, Helvetica, sans-serif">Chat Magazine May 2019</span></span></td></tr>
</tbody></table>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">World Scleroderma Day
2015, 29th June. </span><br /></span>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: arial;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: arial;"><span face=""arial" , "helvetica" , sans-serif">James Carver, myself, Prof Chris Denton</span></span></td></tr>
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<span style="font-family: arial;"><br /></span>
<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" lang="EN-US" style="font-size: 12pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><b>Raynaud's</b>: </span></span></span> </span></span></div>
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<span style="font-family: arial;"><br /><iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/LwEMpz77N_I/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/LwEMpz77N_I?feature=player_embedded" width="320"></iframe></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">October: </span></span></div>
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<span style="font-family: arial;"><img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt;"> </span></span> </span></span></div>
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<span style="font-family: arial;"><span style="font-size: xx-small;"><span face=""arial" , "helvetica" , sans-serif"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 106%;"><span face=""arial" , sans-serif" style="font-size: 12pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span face=""arial" , sans-serif" style="font-size: 12pt;">here</span></span></a><span face=""arial" , sans-serif" style="font-size: 12pt;"> </span></span></span></span><br /></span>
<span style="font-family: arial;"><span style="font-size: xx-small;"><span face=""arial" , "helvetica" , sans-serif"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 106%;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><br /></span></span></span></span></span></div>
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<span style="font-family: arial;"><span style="font-size: xx-small;"><span face=""arial" , "helvetica" , sans-serif"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 106%;"><span face=""arial" , sans-serif" style="font-size: 12pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span face=""arial" , sans-serif" style="font-size: 12pt;">here</span></span></a><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-spacerun: yes;"> </span> </span></span></span></span><br /></span>
<span style="font-family: arial;"><br /></span>
<span style="font-family: arial;"><span style="font-size: xx-small;"><span face=""arial" , "helvetica" , sans-serif"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 106%;"><span face=""arial" , sans-serif" style="font-size: 12pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span></span></div>
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<span style="font-family: arial;"><span style="font-size: xx-small;"><span face=""arial" , "helvetica" , sans-serif"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 106%;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: arial;"><span style="font-size: xx-small;"><span face=""arial" , "helvetica" , sans-serif"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 106%;"><span face=""arial" , sans-serif" style="font-size: 12pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br /></span>
<span style="font-family: arial;"><span style="font-size: xx-small;"><span face=""arial" , "helvetica" , sans-serif"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 106%;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></span>
<span style="font-family: arial;"><span style="font-size: xx-small;"><span face=""arial" , "helvetica" , sans-serif"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 106%;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></span></div>
<span style="font-family: arial;"><span style="font-size: xx-small;"><span face=""arial" , "helvetica" , sans-serif"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 106%;"><span face=""arial" , sans-serif" style="font-size: 12pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br /></span>
<span style="font-family: arial;"><span style="font-size: xx-small;"><span face=""arial" , "helvetica" , sans-serif"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 106%;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><br /></span></span></span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span face=""arial" , "helvetica" , sans-serif">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span face=""arial" , sans-serif" style="font-size: 12pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span face=""arial" , sans-serif" style="font-size: 12pt;"><br /></span>
<span face=""arial" , sans-serif" style="font-size: 12pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span face=""arial" , sans-serif" style="font-size: 12pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span face=""arial" , sans-serif" style="font-size: 12pt;"><br /></span>
<span face=""arial" , sans-serif" style="font-size: 12pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOfF-qq1-KZU5hCbp1b7lqmlyNidr8XGoSbSn_GWmvHsYvCmBzaOpmSl6gQGf_nolytlUjSqlUbaVnXkMYRzrgJwZGBMUNldpPd9FME2YT5m9zPGVkp1U9wbC06esCnafJ4iKcM4bAJpxR/s400/2019+RaynaudsRF+hands%252C+thermo%252C+foot.jpg" width="400" /></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Last Update: </span><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 107%;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 104%;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 107%;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 104%;"><span face=""arial" , "helvetica" , sans-serif">Feb 2020. </span></span></span></span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><span face=""arial" , sans-serif" style="font-size: 12pt; line-height: 107%;">Scleroderma Awareness Raising 2018 - Medical Research Investment. </span></span><br /></span>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;">Scleroderma, Raynaud's,
Autoimmune Rare Disease. </span></span></div>
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<span style="font-family: arial;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;">blog.raynaudsscleroderma.co.uk</span></a></span></span></div>
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</span>Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-24821305923707832832018-06-30T00:25:00.001-07:002020-02-24T06:31:30.043-08:00Anne Mawdsley, UK. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease. <div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC407K9TTg43QidRp_dyzFyEBSeEXmybe4F8pyevzjsk9xphhObvRJdO0Kt0bePDcXCjIGsCDwjvEm_qDwXRtR9NAJu0rqBRZ6CdTO5mn7frxRXNQ50iKuu-KkrFUQI8dkibxQS-mMem4/s640/2018+Anne.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Anne
Mawdsley, UK.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness Month 2018.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Raynaud's, Autoimmune Rare Disease. </span><br />
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<a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;"><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></b></span></span></a><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></b></span><br />
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<span style="font-family: "arial" , sans-serif;">#RaynaudsFreeWorld
#SclerodermaFreeWorld</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">blog.raynaudsscleroderma.co.uk</span></span></a> </div>
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<span style="font-size: x-small;"><span style="font-family: "arial" , sans-serif; line-height: 102%;"><img border="0" data-original-height="107" data-original-width="180" height="380" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheXYvCc0EFPtqFw90wYCir3R-4RttXuALDejnFc5oGB52J37rxgHHBMJzfJ2gIYdc9ZEp4v79jDrAiz7ZyeDBLk4eLLfxgn9qR68N3Ak414H6UyrjDlxGa6TaocVOa4MpJsAIRpwBFl4c/s640/15094985_1247832735280759_3320376721336467180_n.jpg" width="640" /></span></span></div>
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<span style="font-size: x-small;"><span style="font-family: "arial" , sans-serif; line-height: 102%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Anne Mawdsley, UK </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have chosen to make
Anne the focus of the final day of my Scleroderma Awareness 2017 and 2018 Patient
Profiles Campaign. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Without a shadow of a
doubt, the entire global scleroderma and Raynaud’s community are eternally
indebted to Anne for her tireless fundraising and relentless awareness raising,
having set up the Raynauds & Scleroderma Association in 1982. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Like most scleroderma
and Raynaud’s patients, Anne was a character who you would never forget, after
first meeting. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Her zest for life and
‘can do’ attitude, regardless of living with a body which had been consumed
with the diagnosis for decades, was frankly, extraordinarily superhuman. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I accept that there
are no two scleroderma and Raynaud’s patients who present with the exact same
set of symptoms, and so, direct individual patient comparisons can not be used
as an accurate, scientific measure of outcome prediction or individual symptom
severity. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">But, by being an
example of how to live with this diagnosis with respect for the symptoms, Anne
showed that it can be done. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This has given me
tremendous strength in persevering through some of my more challenging days -
365 days of the year, over the last, what will soon be, 20 years! </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And, encouragingly,
the ‘long term’ patients included within my Scleroderma Awareness Month 2017
Patient Profile Campaign, also show that it is possible for the disease to
become latent, manageable, and, in my personal experience, reversed. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For, 19 years post
diagnosis, on 30<sup>th</sup> November 2016, Prof Chris Denton confirmed that
‘my skin has now cured from scleroderma’. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">However, I was lucky
– I had an early-ish, <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">early diagnosis</span></a>, where treatments to suppress the symptoms
(not a cure), still remained a viable option to me, even though my name was
included on the stem cell transplant list, during this time. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Consequently, through
early-ish intervention, I have minimal internal organ damage other than severe
GERD and MSK joint pain as my most severe symptoms, making for my full time
job. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">From first being
diagnosed, <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/scleroderma-raynauds-rare-disease.html" target="_blank"><span style="color: blue;">initial diagnosis</span></a>, back in Autumn 1997, Anne was of huge
support to my family and I. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although, for my
first decade of living with the diagnosis, my family had more contact with Anne
and the RSA than I, as I was still not ready to talk so ‘matter of factly’
about the diagnosis, and how it had turned my world upside down and shattered
my dreams. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Anne created and set
up the RSA in 1982, which included an annual conference aimed at patients and
families alike. I know that my family benefited greatly from the information
provided at this forum, as well as, were helped with their understanding, by
meeting others in the same ‘scleroderma boat’. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Over the years, I
watched Anne, each year, challenge herself and her body, with the most ‘crazy’
fundraising events, which she subjected her body to. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">One such event was a
sleigh ride with huskies in Finland, which the scleroderma medical genius
trailblazer, Prof Chris Denton, had strongly advised against! </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Another event, and,
sadly, the last time where I saw Anne, was her pedalo challenge down Lake
Windermere, June 11<sup>th</sup> 2012, with an actor from the BBC1 drama
‘Eastenders’. </span><br />
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although it was an
early summer’s day, the temperature thought otherwise, and by the finish line,
Anne was shivering with cold. But, hats off to Anne, she DID it, with her
devoting and loyal husband, Harry, supporting her throughout. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I often joked
with Anne that ‘I needed a Harry’ as their unconditional love for each other
was so heart warming and endearing. </span><br />
</div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The photo below shows
Anne at the finish line. I am on the right of the photo, holding my white dog,
Mitzy, as the swans were tying to attack her! </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLVLlmIEeRBGdxkbe3YzQKeVacLA1eHpHnKa9Q2BBYcuvV8e2HtP1iBevFkJAqM9r0NlSvQluYncCk_sWp6hA6g0SAD5_CgOdv8f2XFU6Oq7zIfchoDJAqkZF0FJgYTxWEeEEtJuJVWI0/s640/10177517_860760727302409_2856152629168692508_n.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Anne completing her pedalo challenge 11.6.12</span></td></tr>
</tbody></table>
<div style="text-align: justify;">
<span style="font-family: "arial" , sans-serif;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It was a great day,
to be able to share 'the moment' with Anne, and, in one of my favourite places
in the world, even though the temperature was rather refreshing for a Raynaud's
and scleroderma patient! </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I also had the
opportunity to meet the lovely fellow patients Bev Myers and Hannah Gray. Anne
was great at bringing everyone together, united by our rare diagnosis. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have written about
‘Living the dream being your own Raynaud’s and Scleroderma advocate’ <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/living-dream-being-your-own-raynauds.html" target="_blank"><span style="color: blue;">here</span></a>, a role which I am truly humbled by. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I owe huge thanks to
Anne for developing me into such a scleroderma and Raynaud’s parrot without me
realising, at the time! </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Anne was good like
that – she told me that she had even got Prince Charles to agree to sign her
book when he planted a tree in celebration of the RSA 20<sup>th</sup>
anniversary at Highgrove. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As I highlighted at
the start of this piece, if you had met Anne, you would never have forgotten
her. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last year, driven by
Anne’s work, I set up this blog space as well as a Facebook page and a google
plus <a href="https://plus.google.com/communities/115644437712711107914" target="_blank"><span style="color: blue;">community</span></a>, with <b>all donations going direct</b> to
fund medical research at the Scleroderma Unit, The Royal Free Hospital, led by
Prof Chris Denton. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It is with deep
sadness that I am writing this profile, however, I know that Anne is in a pain
free, scleroderma and Raynaud’s free, place now. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly grateful
for her friendship and all that she did to pave the way to improve the
landscape for patients in so many aspects. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This was highlighted
and recognised within the P152 Poster ‘Optimizing Scleroderma Centers of
Excellence: Perspectives from Patients and Systemic Sclerosis (SSc) Experts’
presented at the 4<sup>th</sup> Systemic Sclerosis World Congress held in
Lisbon last year. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">With an
acknowledgement '<b>dedicated to the memory of Anne, founder of the Raynauds
and Scleroderma Association UK, who raised over 10 million pounds for SSc
research, education and advocacy in her lifetime</b>.' </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">P152 Poster is
included within Volume 1 Number 1 of the Journal of Scleroderma and Related
Disorders, and can be downloaded to view, <a href="http://www.sclerodermajournal.com/article/46cc360c-dc9e-4030-98da-6b5da7f2a0b8" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read more about
Anne, Click <a href="https://www.theguardian.com/society/2014/nov/07/anne-mawdsley" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>RIP Anne Mawdsley </b></span></div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b><br /></b></span></div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>31 May 1942 - 12 October 2014</b> </span></div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Forever within our
hearts, and whose legacy will live on. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It is with huge
thanks, I owe to ALL of the patients who took part in the Scleroderma Awareness
Month 2017 Patient Profiles Campaign - Research. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Every patient’s
story brought tears rolling down my face, as I put the campaign together. </span><br />
</div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Which, had not been
envisaged by me, whilst the idea of the campaign was in its infancy. My
Sjogren’s overlap symptoms were on strike for a few/most days during June Scleroderma
Awareness Month! </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Living with this
diagnosis makes you dig deep into finding out who you really are, and what /
who, is truly really important to you. As Bob Marley sang, ‘You never know how
strong you are, until you have to be’. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I hope that this
Campaign has been of interest, not just from an educational perspective but
also, from a supportive element to fellow patients. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Campaign has
highlighted the universal hallmarks for best patient management, treatment and
care. </span><br />
</div>
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</div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
<br />
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><br /></span></span></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span></div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
<br />
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
</div>
<div style="text-align: center;">
<div style="text-align: center;">
<br />
<div class="MsoNoSpacing" style="text-align: justify;">
<br />
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">(expert specialist as the clinical lead).</span></span> </span></span></span></span></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><br /></span></span></div>
</div>
</div>
</div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span></span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As well as, the
Campaign has highlighted universal global patient unmet clinical needs. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Namely: </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud’s / Digital
Ulcers </span></div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: center;">
</div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">GERD
involvement </span><br />
</div>
<div class="MsoNoSpacing" style="text-align: center;">
</div>
<div class="MsoNoSpacing" style="text-align: center;">
</div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Calcinosis </span></div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: center;">
</div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue /
Pain </span></div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: center;">
</div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">CAUSE and CURE to be
understood #SclerodermaFreeWorld </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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</div>
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</div>
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</div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">THANK YOU AGAIN, TO
EVERYONE WHO TOOK PART AND TO EVERYONE WHO SHOWED THEIR SUPPORT <b>#SclerodermaFreeWorld
#RaynaudsFreeWorld </b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b><br /></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco del Galdo </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span> </span></span></span></span></div>
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Flashback</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQecKgdOZoiUN5MztR7PLe42WtewQ7eSWfhKvxjW5KNChodxF9bfcOa8bwRUUQM-BmNTNdQWOs4gD3Yy9ViPtabwmYacLWCB-Jb-IHa-JhyqEuzfnPgTP2NWpieQehH5nS8Yp_8XjlgC_f/s400/2019+Feels+like.jpg" width="276" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ZuswSyFmIIiUZ8QSx5VDCl1jwi_i-7CDHPBfNh5Ma-dAy-aeU6Qw2QJ0p-Y3iJVK3AcBPUV44Fte6LauyuS0kmmOKgJYydhHVXC-R6gYnr9TkeCw5lXlT-RK4vmsh3zlXbAyPQ-5rgU/s320/NW+%252B+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="176" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<br /><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/LwEMpz77N_I/0.jpg" src="https://www.youtube.com/embed/LwEMpz77N_I?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
<span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Anne
Mawdsley, UK.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness Month 2018.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"> </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Raynaud's, Autoimmune Rare Disease. </span><br />
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<a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;"><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></b></span></span></a><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></b></span><br />
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<span style="font-family: "arial" , sans-serif;">#RaynaudsFreeWorld
#SclerodermaFreeWorld</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">blog.raynaudsscleroderma.co.uk</span></span></a> </div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-50778461920326475772018-06-29T00:39:00.000-07:002020-02-24T06:40:02.229-08:00Wyatt the Warrior, USA. WORLD SCLERODERMA DAY. 29th June. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnnZ3OsxqHMbsOASQrU8Fojq1FSVrk_x-KI0YAzSjfAnrL74dxPILI_UYAFPXPj68bebul2HHkvn5oHwXdb56y05F1TBghVQcVgVbjcBJE3UT55IzkoOoejFT8Jk1dUNVSC17Db69F9bc/s640/2018+Wyatt.jpg" width="640" /> <span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Wyatt
the Warrior, USA.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">WORLD
SCLERODERMA DAY.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">29<sup>th</sup>
June.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness Month 2018.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Raynaud's, Autoimmune Rare Disease. </span></div>
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<a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;"><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></b></span></span></a><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></b></span><br />
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<span style="font-family: "arial" , sans-serif;">#RaynaudsFreeWorld
#SclerodermaFreeWorld</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">blog.raynaudsscleroderma.co.uk</span></span></a></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1184" data-original-width="888" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKYb476WFCVMyUiQkUqzndBbogoWbwHAq7f4Smtk6PUwjeAgdHACch_yzg0g54ZDP4txHtsy59eceF4IlzmzhtLFoHuzd-GspybTsSLFJDHF6fWdfb_b0Ddr1tn0LVSRes4yYFCwMP_hU/s640/19402650_1594903737210032_433712831_o.jpg" style="margin-left: auto; margin-right: auto;" width="480" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Wyatt The Warrior, USA</span></span></td></tr>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">TODAY is
World Scleroderma Day</span></b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span><br />
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<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTQGRzLv338JJn-8BkTe54QYunNCosvY0nZIbhoU1YZAeqKnqay4JfiouHRTiBcmycO7WCGHncJSfxNYtq684JGWrlMMHSDl0qgwopyH4dy-iQZq3ZTw_E9UA5eSZx6owUMYGYTkOKHH0/s640/WSD+2018+April.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Today’s patient profile focusses on a most brave and inspirational
scleroderma patient:</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Wyatt The Warrior - WYATT WRIGHT</span></b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Wyatt’s attitude and how he manages his diagnosis is truly remarkable.</span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="200" data-original-width="200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpgFt9IGR_aD6LE7h7zh-m-1cDtwlsVbj-SHXVIP8WP8O3JU9C6S4pH7LjZ6oDNPC21aVqHqJYBWVc7jgOBhk_yGtwPe3yNA7sjxPd9TheTFUD_Tlg6DDshzH06P7Cc0K90sFQ559j7Gs/s640/19430168_737808449752541_8638082377824638356_n.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Wyatt's picture explaining Scleroderma</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsHZR1_Q1OGYJWDtOfd6uzfiCgj7ZhUmxX8LrNn2uEehHmV8dhsF1C7JC78b09QIb6W31iMTcRE9GgHQFbzGGQe1Y7PPwgr-fdfuC_nIcPtQKczcMTO4lofWV3v0srgTBj4ESiENTeVRY/s1600/19466371_737800526420000_2148733228512927461_o.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="683" data-original-width="1024" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsHZR1_Q1OGYJWDtOfd6uzfiCgj7ZhUmxX8LrNn2uEehHmV8dhsF1C7JC78b09QIb6W31iMTcRE9GgHQFbzGGQe1Y7PPwgr-fdfuC_nIcPtQKczcMTO4lofWV3v0srgTBj4ESiENTeVRY/s640/19466371_737800526420000_2148733228512927461_o.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Wyatt with his twin brother Weston, and their friends, Living the dream</span></td></tr>
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<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As is Candace, his
mom, truly remarkable with her relentless efforts to ensure Wyatt has the best
medical care, as well as, her tireless efforts with scleroderma awareness
raising and fundraising. </span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSda93Mz7m8LHpWwixMmM2oLd3m_Pb7SJiU0ff2G0kRYex7R-4IpJwTTjubzYjFxN2aJga4eoreMJyaz29fTz6oQkFa5l_R3o8ZFHLuOgumiyDiB59tU9JeKlDQxv2gWWAWeQBZZ4b_X0/s640/18403301_1547538348613238_2261057623936883991_n.jpg" style="margin-left: auto; margin-right: auto;" width="480" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Candace - supermom</span></span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Name:<span style="mso-tab-count: 2;"> </span>Wyatt the Warrior</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">as told by, his
superhuman mom, Candace </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Location:
Derby, Kansas, USA.</span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Diagnosis:<span style="mso-tab-count: 1;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Limited Scleroderma,
Raynaud’s </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mixed Connective
Tissue Disease </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Year of diagnosis:<span style="mso-tab-count: 1;"> </span>2014, 2017 </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Age at diagnosis:<span style="mso-tab-count: 1;"> </span>8<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Where / who
diagnosed you? </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Dr Goodwin in Kansas
City at children's mercy diagnosed him. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Now our Dr is Dr
Cooper in Kansas City at Children's Mercy. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What were the
presenting symptoms? </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">I had
noticed what looked like dirt on his ankle and accused him of not showering
properly. I later took an alcohol prep pad to wipe it, and it didn't come off. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">The more
I looked at the leg I noticed ‘the dirt’ travelled up his leg. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">It had
already crossed 3 joints, the ankle, knee and hip, all on the right side. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">It was
spreading to his chest and on to the right elbow as well.</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">After
several trips to the doctors office and firing one doctor, we had a positive
RNA test. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">That
rheumatologist knew right away, what it was. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Wyatt
was started on Methotrexate and was told he would take daily injections
for 4-6 years.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 reality:<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Since
his diagnosis, Wyatt has had several other things come out of the wood work. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">He now
has frequent migraines, and is a on a daily medication for them, plus takes Vit
B2 to help. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">He has
tried several other vitamins and meds but they have not worked very well. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Wyatt
has what the medics call ‘a cocktail’ - which is 3 meds he takes all together,
as a rescue, for when they get really bad.</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Wyatt
has had severe problems with his GI tract. He feels nauseated most of the time,
which I can't even start to know how it feels, when you want to throw up all
the time. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br />
<br />
<span style="color: black;">It has to be miserable. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">He is on
2 daily medications to help with this, along with his appetite. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br />
<br />
<span style="color: black;">Zofran is his best friend all the time, we never
leave home without it.</span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Wyatt
now has a tic disorder, they seemed to keep getting worse so we went to another
neurologist, who prescribed daily tablets.</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Wyatt
also takes folic acid because the mouth sores get too bad without it.</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 12.0pt;">Just in
the last few months we had a positive RNP antibody test, this leans us towards
a Mixed Connective Tissue disease.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">He is still on the
same meds but we are having a hard time with his weekly shots, we have started
weekly IV fluids to try and help this matter out. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">We are getting a
second opinion on the GI Issues.</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What are your <b style="mso-bidi-font-weight: normal;">3 biggest current challenges</b> due to
your diagnosis?<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Challenges consist
of not being able to be a a normal kid all the time. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">He has several visit
to hospital and missed out on baseball games. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Skin tightness in
his leg has slowed him down and caused his legs to hurt. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What are your <b style="mso-bidi-font-weight: normal;">3 top tips</b> for living with your
diagnosis?<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Make sure you get
second opinions when you are unsure of what your doctor’s treatment, or if they
are unsure. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Find a support
group. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Stay educated.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What are your <b style="mso-bidi-font-weight: normal;">3 wishes</b> for the future?<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">More funding for
research, a cure, and that our scleroderma family have a good support
system. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Earlier this year,
Candace and Wyatt organised a Scleroderma awareness Billboard, near to where
they live. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read more about
this, Click <a href="https://raynaudsscleroderma.blogspot.co.uk/2017/03/wyatt-warrior-linear-scleroderma-and.html?showComment=1498642692248#c2351514271691358160" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
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</span></span>
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<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;"><br /></span></span></span></div>
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</span></span>
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<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" data-original-height="959" data-original-width="742" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIoTURbpbrY0dYeiIwagUNr9OSqCCuBaeCdm5hge6-Mi7pocpfTiWVjQfOfAfuEwYLbySalHsvygxZb-7n3eHJfOdfhW3Rlq_fpJHrXgqjmHTWdTvsJN_gShQGycFjCoCpNP6doM-gLyc/s640/17201100_661671854032868_2775716106948224933_n.jpg" width="494" /></span></span></div>
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">
</span></span>
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<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;"><br /></span></span></span>
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;"><br /></span></span></span></div>
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;">To read about Wyatt taking
part in Models for Miracles” in Wichita, Kansas, April 2<sup>nd</sup> 2016,
Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;"><a href="https://sclerodermanews.com/2016/03/30/autoimmune-awareness-month-spotlight-on-the-ssc-patient-wyatt-wright/" target="_blank"><span style="color: blue;">here</span></a>
</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;">Candace and Wyatt fundraised for Angela Fernandez, an 8 year old systemic sclerosis
princess to
attend the National Scleroderma Conference in Chandler Arizona, 2017. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;"> <span style="mso-spacerun: yes;"><br /></span></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvH8Mltg1gSY0vpuklFk8vJM_7XVEr6-dxqqrF9gCFOYfCYGBLRQ4frn_xZDO7Zs8BmCuiKb5yKCm2-KWKM51aqisFX8ekCBFLz8H2Y3CUqTkOX5NnYr3a_xsdnGny8J4bfhx6efH0br4/s1600/19467803_1022894807846702_8622270738078405983_o.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="965" data-original-width="967" height="638" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvH8Mltg1gSY0vpuklFk8vJM_7XVEr6-dxqqrF9gCFOYfCYGBLRQ4frn_xZDO7Zs8BmCuiKb5yKCm2-KWKM51aqisFX8ekCBFLz8H2Y3CUqTkOX5NnYr3a_xsdnGny8J4bfhx6efH0br4/s640/19467803_1022894807846702_8622270738078405983_o.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Angela Scleroderma Conference</span></td></tr>
</tbody></table>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;">To view Wyatt the Warrior
Facebook Page, and fundraising items, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;"><a href="https://www.facebook.com/wyattwrightthewarrior/?pnref=story.unseen-section" target="_blank"><span style="color: blue;">here</span></a> </span><br />
<br /></div>
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<img border="0" data-original-height="960" data-original-width="630" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMVTKkunOG-GyczXDFIbmWAzIgtmoxMXS_P9g7bGppbXAKaJZFEQrYwjwrRTAPcGD6EsEbM7STISxYrHo8p6SULhZzWerIEedlk2vHv68kycgVFTzT2TxQqALhUZbdwmGSLBO_tOc7OmI/s320/12321458_1686162708267869_6899799114077209650_n.jpg" width="210" /></div>
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<img border="0" data-original-height="960" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVRv9iMOrD8X1s96BHfbUuREp7hTv6glAVLlk89eutnRAevAlZp5ZmOk2lHJ6HaJw8XxkyGXz4zLhOrJMSEuYQhK14e4R3oYxudrQJRdJFLltCn_639ZdpPfP9r318hm2cpOOIMnBSbh0/s320/13659196_554470611419660_5381324810946971257_n.jpg" width="320" /></div>
</span></span><br />
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<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" data-original-height="960" data-original-width="772" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0nVrHlwKF4Dr3imF_sa_PPQUJabQOcnMt-Qg5o9k4y7kxLD_e9mNIizTSPcLNSXmPqRD2egHRfBdQ9V68Eg4nGmWyCOYDvna8hv_S0ox38fXGHbNeKXGz83Bthk_td-sT1ouVw7v-lEA/s320/17021854_658957287637658_506043054834467065_n.jpg" width="257" /></span></span></div>
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<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld #RaynaudsFreeWorld </span></span></span><br />
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="640" data-original-width="960" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgooZX9TWzaLA0mWr7cgGJHgraGz2BFtPgOydmkOh4wDHxUCFl2I4rVcwC43bEjdOmbZFyWUK90PiiyG82o8c_ENrmdO7lUZOEuepWzETeymJQmUralYX8wGFpz_ikM_DxqkmuxupeWFMo/s640/19551027_1601389269894812_236753318_n.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Wyatt with his Mom, and family</span></td></tr>
</tbody></table>
</div>
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</span></span>
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<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></div>
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</span></span>
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<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;">To
read my article for World Scleroderma Day 2017, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;"> </span></span></span></span></div>
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<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.blogger.com/null" name="_Hlk484421106"></a><a href="https://www.blogger.com/null" name="_Hlk486255991"></a><span style="mso-bookmark: _Hlk486255991;"><span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Huge thanks go to Candace for sharing Wyatt’s
scleroderma reality and experience in such detail, for Scleroderma Awareness Month. </span></span></span></span></span><br />
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="mso-bookmark: _Hlk486255991;"><span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></div>
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<span style="mso-bookmark: _Hlk486170470;"><span style="mso-bookmark: _Hlk486255991;"><span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Infinite gratitude goes
to Candace for all that she does throughout the year for raising awareness of
scleroderma and helping other patients, especially other families sharing the
same heartbreak of seeing their child go through this diagnostic reality. </span></span></span></span><br />
<span style="mso-bookmark: _Hlk486170470;"><span style="mso-bookmark: _Hlk486255991;"><span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
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<span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It is with pure
intention that I made Wyatt the focus of today’s patient profile, <b>29<sup>th</sup>
June World Scleroderma Day</b>. </span></span></div>
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<span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have a photo of Wyatt
on my desk, and on my more challenging days, seeing him, and knowing a snippet
of what he goes through, keeps me on track with my efforts to help with the
dream of a <b>SclerodermaFreeWorld,</b> becoming a reality. </span></span></div>
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<span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It is my ultimate dream
that the cause and cure to scleroderma will have been discovered before Wyatt’s
21<sup>st</sup> birthday, and even better, if this scientific mission is
completed before then! #Belief #Hope </span></span><br />
<span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">June 2017. </span></span><br />
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<span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 UPDATE:</span></b></span></span></div>
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<span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Wyatt has been diagnosed with Linear Scleroderma, a positive RNP with
not a specific diagnosis, Asthma, Gastroparesis, Tourette syndrome, &
Migraines.</span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Current <b style="mso-bidi-font-weight: normal;">MEDICATIONS:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Methotrexate, Folic Acid, Vit B, Bus prone, Amitriptyline, Prilosec,
Guanafacine, some of these are several times a day.</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">RESEARCH 2018: </span></b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">We have not taken part in a research trial. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I sure wish they had them for children</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">IN BETWEEN MEDICAL APPOINTMENTS:</span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">We have started our Foundation and we are super proud to say that we get
to send 2 families to the national Scleroderma Conference this year.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As well as, we have helped out several others, with medical needs with
travel and medication.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Wyatt is now home schooled due to missing so much school these last few
years. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Now, he works at his own pace, and rests, when it is needed. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">He did above and beyond this year. He ended with 3 B's and 2 A's.
We are super proud of him. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">He is playing baseball and racing this year as well. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Family Day
2020</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">25<sup>th</sup>
Anniversary Meeting</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Atrium, Royal Free
Hospital, London, NW3 2QG</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Chair: Professor Chris
Denton</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">PROVISIONAL PROGRAMME</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">09.30 – 10.00<span style="mso-tab-count: 1;"> </span>Registration
and Coffee </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.00 – 10.20<span style="mso-tab-count: 1;"> </span>Welcome<span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 4;"> </span>Dame
Carol Black </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 2;"> </span>Prof Chris Denton &
David Abraham </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.20 – 10.40<span style="mso-tab-count: 1;"> </span>What
is a Biopsy?<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 1;"> </span>Dr Kristina Clark </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">10.40 – 11.05<span style="mso-tab-count: 1;"> </span>Dental
aspects of Scleroderma <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 1;"> </span>Prof Stephen Porter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.05 – 11.25<span style="mso-tab-count: 1;"> </span>Gastrointestinal
problems – <span style="mso-tab-count: 2;"> </span>Dr Fiza
Ahmed </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">shedding
new light on old problems<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.25 – 11.50<span style="mso-tab-count: 1;"> </span>Pulmonary
hypertension and the heart<span style="mso-tab-count: 1;"> </span>Dr Gerry
Coghlan </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">11.50 – 12.15<span style="mso-tab-count: 1;"> </span>Scleroderma
cohort studies – <span style="mso-tab-count: 2;"> </span>Dr
Francesco del Galdo </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>‘Learning
from our patients’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">12.15 – 14.15<span style="mso-tab-count: 1;"> </span>LUNCH
BREAK – see below<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.15 – 14.45<span style="mso-tab-count: 1;"> </span>25
years of progress – <span style="mso-tab-count: 3;"> </span>Prof
Chris Denton </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">from
‘black box’ to ‘positive trials’ </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">14.45 – 15.15<span style="mso-tab-count: 1;"> </span>International
speaker – <span style="mso-tab-count: 3;"> </span>Dr
Madelon Vonk</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-tab-count: 3;"> </span>Scleroderma
Management in Netherlands </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">15.30 <span style="mso-tab-count: 3;"> </span>Raffle
</span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Lunchtime Discussions Groups /
Demonstrations include: </span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Clinical Trials <span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Rachel
Ochiel and team</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">National Institute of Health Research<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span>Christine Menzies </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Drug Information / monitoring <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Pharmacy</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Massage <span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 3;"> </span>Keith Hunt MBE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Hypertension Education / nursing <span style="mso-tab-count: 2;"> </span></span><span style="font-family: "arial" , sans-serif;">Sally
Reddecliffe/Adele Dawson</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatology Laboratory <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>Research
Laboratory Staff</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Education / Nursing <span style="mso-tab-count: 1;"> </span><span style="mso-tab-count: 3;"> </span>Louise
Parker/ Joseph Cainap</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thermography<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 3;"> </span>Dr Kevin Howell</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">SRUK<span style="mso-tab-count: 5;"> </span><span style="mso-tab-count: 3;"> </span>Ollie Scott</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sjogren’s syndrome <span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 3;"> </span>British
Sjogren’s Society </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To Read My Articles: </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gift in My Will, Click <a href="https://blog.raynaudsscleroderma.co.uk/2019/03/gift-in-my-will-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Planning for the Future, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/03/planning-for-future-nicola-whitehill.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.rarediseaseday.org/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Rare Disease Day</span></a></span>: </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2020: </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt <a href="https://www.royalfreecharity.org/events/view/scleroderma-awareness" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span> </span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: Leaving a Legacy Gift, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click <a href="https://www.youtube.com/watch?v=9V3JK3jnPVE" target="_blank"><span style="color: blue;">here</span></a> </span></span> <br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/03/rare-disease-day-2018-research-taking.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-february-28th-2017.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Flashback</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Rare
Disease Day </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/rare-disease-day-2017-raynauds.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">unmet clinical needs to the scleroderma patient</span></a></span><span style="color: blue;"><span style="font-family: "arial" , sans-serif;"><u><br /></u></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease Day <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-day-2016-scleroderma.html" target="_blank"><span style="color: blue;">Patient Voice</span></a></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Rare Disease UK Parliamentary <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/rare-disease-uk-rare-disease-day-2016.html" target="_blank"><span style="color: blue;">Reception</span></a> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rare
Disease Day is a fantastic opportunity for the <b>entire</b> rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides – </span></div>
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<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span></b></span><br />
<span style="font-size: large;"><b><span style="color: red; font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-size: small;">provides the brightest light</span></span></span></b><span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">, </span></b></span></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">for the illumination of </span></b></span><br />
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif; line-height: 101%;">the rare disease
patients’ plight.</span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read about medical research at the scleroderma unit, Click <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> overall. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">optimum
patient care, 3 hallmarks preside: </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue;">Early diagnosis</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue;">Expert specialist centers</span></a></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span></span><a href="http://blog.raynaudsscleroderma.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue;">Access to innovative medicines</span></a></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;">supported by a medical</span> ‘<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">dream team</span></a>’ </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: black;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">(expert specialist as the clinical lead).</span></span> </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>INVESTMENT in MEDICAL RESEARCH is CRUCIAL. </b></span> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Celebrating 20 years of being a patient at the Scleroderma Unit, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2019 New Challenges, Click <a href="http://blog.raynaudsscleroderma.co.uk/2019/01/a-new-year-and-new-challenges.html" target="_blank"><span style="color: blue;">here</span></a></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span> </span></span></span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2018/02/if-we-only-had-more-research-investment.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of Medical Research and Awareness to the </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Raynaud's, Autoimmune Rare Disease</span> patient, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 Scleroderma Awareness Raising </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Medical
Research</span>, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: blue;"> </span> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>SCLERODERMA:</b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's- How to Diagnose, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><br /></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">'All you need to know', 2016 Awareness Video, Click <a href="https://www.youtube.com/watch?v=kq1g_7BJZjc&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=3&t=0s" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Global Patient Profiles 2018 Video, Click <a href="https://www.youtube.com/watch?v=l_u1ZUo83YM&list=PLvZ4PV2dLOvbIZb05SZdA6tiQNsQGHNrc&index=1" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Unmet Medical Needs, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/G_0W85rO0Ws/0.jpg" src="https://www.youtube.com/embed/G_0W85rO0Ws?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Calcinosis Video, Click <a href="https://www.youtube.com/watch?v=G_0W85rO0Ws" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">The scleroderma tooth fairy, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/the-scleroderma-tooth-fairy-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;">Skin Cancer and scleroderma, Click <a href="https://blog.raynaudsscleroderma.co.uk/2018/11/scleroderma-skin-cancer-and-other-skin.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span></span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"><br /></span></span></span></span></span></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"><span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"><span style="color: black;"> </span> </span></span></span></span></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">June 2019</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, 2020, I am celebrating 22 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2018/12/celebrating-20-years-at-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work ethic and commitment to
their patients. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis. </span><br />
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<img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogEzAayVpgwD71ZHxFNqguns0yjX3J8q_P0IYQ8HnW4hdyCWFsOUYH9DwJdendzYE1AHQ_CtYdM4W9pOHkKCPzNPLBPqUas1S1Xq7yo7rxvKmnsBkHj-dL4iIwYYNxLqFMGFzG_qlYlo/s400/illuminating-the-rare-reality.jpg" width="400" /> </div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chat Magazine May 2019</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<img border="0" data-original-height="1040" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcQHVsb-lx8JKsi2TC7m4KxEKHAomi3SdTlGTDN95iZpnkVhI5hSJ92mKeDostLxFW77VnLCqZsbLRj1oTVABuTTNsHs-n0iN9HCWEFGWbx6Yp_T2p668uoEmZNMWKjxAm99Xt6K7rT3O/s640/2019+WSD.jpg" width="441" /> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/07/scleroderma-awareness-raising-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day 2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">October: </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi28ELTY2obtd7D5W37CBBGDTN84onQSHuOcY7MnmF5r5s180wrqJwuQPWOgHNEFgNYNrEr1EPQjhycHJs4ZaS3D-0E2HGZVyE9iC-896BNgfyTGFe-JNzRG_HPal-9I1quvEHWw2Yxm5HP/s400/2019+RaynaudsRF+Capillaroscopy+Camera.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a></span> </span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span> </span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the UK treatment guidelines for
Raynaud’s Phenomenon, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/raynauds-phenomenon-rp-bsr-and-bhpr.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the EULAR treatment guidelines, Click </span><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/eular-raynauds-treatment-guidelines-in.html" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">here</span></span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph Video, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/thermograph-image-video-showing-hands.html" target="_blank"><span style="color: blue;">here</span></a>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span></div>
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<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Thermograph image, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/09/raynauds-awareness-month-october.html" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></span></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></span></span>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Raynaud’s reality, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/living-dream-raynauds-style-nicola.html" target="_blank"><span style="color: blue;">here</span></a> </span></span></span></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTPC-hbLv6F292JBtsQ86n59vGTX6biYmhHH2nPqulDABmNtxtwvlvo0OJh_BFw9V4JeJe4UyQvjvYXYHpW-5qCUTdA53un13QxdE9zmvyHgnD9D7YXJ1GxdFVydBKlM1dg5jbn-Zwdo/s320/NW+%252B+Dr+H.jpg" style="margin-left: auto; margin-right: auto;" width="180" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The global Raynaud's trailblazer - Dr Howell and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
<a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/nailfold-capillaroscopy-equipment.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Invisible Disability Awareness Video, Click <a href="https://www.youtube.com/watch?v=zjJawpNnWQQ" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read My ‘Invisible
Disability’ experience, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/10/the-invisible-disability-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">50 Shades of Blue, Click <a href="https://raynaudsrf.blogspot.com/2019/10/living-dream-50-shades-of-blue-raynauds.html?m=1" target="_blank"><span style="color: blue;">here</span></a> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">@SclerodermaRF </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical <a href="https://www.royalfreecharity.org/do/research-and-grants" target="_blank"><span style="color: blue;">research</span></a> at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit,The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Feb 2020. </span></span></span></span></span><br />
<br />
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Wyatt
the Warrior, USA.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></span></span></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">WORLD
SCLERODERMA DAY.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">29<sup>th</sup>
June.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness Month 2018.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"> </span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Raynaud's, Autoimmune Rare Disease. </span></div>
<br />
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue;"><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">www.justgiving.com/fundraising/sclerodermaunit-royalfree</span></b></span></span></a><span class="MsoHyperlink"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></b></span><br />
</div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif;">#RaynaudsFreeWorld
#SclerodermaFreeWorld</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://blog.raynaudsscleroderma.co.uk/" target="_blank"><span style="color: blue;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">blog.raynaudsscleroderma.co.uk</span></span></a></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 104%;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span></span></span></span></div>
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<span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"></span></span></span></div>
</span></span>Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-81980835733464626332018-06-28T00:03:00.000-07:002018-06-28T00:03:06.193-07:00Kevin East, RIP 5th Jan 1967 - 7th Jan 2016. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhport_SMufVE323dlFvnaCB3-V938AlYSw1ou3DYWjGVwTzMxrRbdHS41PY3vnydxP_5aqO1qMHRWIXj1EqTIbi6pWfdg6M74l2VHo2-JkBmfbdErYwPsFJcJ0u02pUyF4i2aOvirATlM/s640/2018+Kevin+East.jpg" width="640" /></div>
<div style="text-align: center;">
</div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Kevin East. </span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">RIP 5th Jan 1967 - 7th
Jan 2016. </span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<br /></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Scleroderma Awareness
Month 2018.</span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Raynaud's, Autoimmune
Rare Disease. </span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="994" data-original-width="560" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYu6XX4LEBn2mlRyHmeV-C4Kf542sLQEpXNPYVYkiVOSdYJWfl3qZWEi0HPrA1nzW1MRsvGs2vAgbOOuFEb3YaLtP__DuwTSqZha7hwno2quc-2ZeCRCAvBEF9pgLFc3LMdfYedcYzL68/s640/Kev+East+and+Debby.jpg" width="360" /></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">As told by Debby,
Kevin’s wife: </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">‘I am so proud of my
husband and how brave he was. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Kevin had a very rare
and aggressive form of diffuse scleroderma. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">He managed to smile
through it all.</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">As a family, we have
met lots of amazing people on our journey. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">We are planning lots
of events to help raise awareness and money for this rare condition. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Thank you for all of
the kind messages and support which we have received. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Kevin was so brave.
We have lost a wonderful husband, best friend and dad. We miss him dearly. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="994" data-original-width="560" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz3SLnujj056A9k14e7X7CwEWjZwEWWNHXV0zncx1dJx_OeIdAHhl6JXUbT4wReMc3W_KWW2xYAJEBvRAI3k4MgMzyvLBWmakfgNleUb3bh-HaEmHDtL55lxmbaTWXXJHRKYzDf9Gf0Qw/s400/Kev+East+October+2015.jpg" width="225" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="uficommentbody"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;"><span style="mso-spacerun: yes;"> </span></span></span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;"><br />
<span class="uficommentbody">I was worried about allowing his pictures to be
published and didn't want to upset anyone, but the kind words, have been
amazing, Thank you again'. <span style="mso-spacerun: yes;"> </span></span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="uficommentbody"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">To
view Kevin’s photo album on the Raynaud’s Scleroderma Awareness Global Patients,
Facebook Page, Click <a href="https://www.facebook.com/pg/RaynaudsSclerodermaGlobal/photos/?tab=album&album_id=1691722311045242" target="_blank"><span style="color: blue;">here</span></a> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="1475" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQdiFk9DYiU4bSQYfr5zWOGv8U_HkeROAnY1-LDKN7VGKEZFEncEjt7DJ28rpi_PScWHd0wRzLSsWwPI0_U4LtaC-g2nroF6Fv_CQOeloZyuqjy6vt_yIevsumQAGm6yVu1XdA4W6dNsM/s320/Kev+East+family+and+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="294" /></td></tr>
<tr align="center"><td class="tr-caption"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof
Chris Denton presenting a plaque to Kevin's daughter, Michelle, and
wife, Debby, for funds raised in Kevin's memory for medical research at
the Unit. Thanks to Michelle for the photo.</span></td></tr>
</tbody></table>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">I was very disappointed to have missed Prof Chris Denton presenting a
plaque to Debby, and Michelle, their daughter, at the recent family day at the
Scleroderma Unit. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">Debby, her family, friend Ryan and other friends, organised a charity
golf day last summer. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">An amazing total of £2000 was donated for medical research at the
Scleroderma Unit, The Royal Free Hospital. </span></div>
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Message Header"/>
<w:LsdException Locked="false" Priority="11" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Salutation"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Date"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Heading"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Block Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Hyperlink"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="FollowedHyperlink"/>
<w:LsdException Locked="false" Priority="22" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Document Map"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Plain Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="E-mail Signature"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Top of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Bottom of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal (Web)"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Acronym"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Address"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Cite"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Code"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Definition"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Keyboard"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Preformatted"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Sample"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Typewriter"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Variable"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal Table"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="annotation subject"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="No List"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Contemporary"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Elegant"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Professional"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Balloon Text"/>
<w:LsdException Locked="false" Priority="39" Name="Table Grid"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Theme"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="0" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" QFormat="true"
Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" QFormat="true"
Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" QFormat="true"
Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" QFormat="true"
Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" QFormat="true"
Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" QFormat="true"
Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
UnhideWhenUsed="true" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="TOC Heading"/>
<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
<w:LsdException Locked="false" Priority="46" Name="Grid Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="Grid Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="Grid Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 4"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 5"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 5"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 5"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 5"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 5"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 6"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 6"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 6"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 6"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 6"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="46" Name="List Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="List Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="List Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 4"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 5"/>
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<br />
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeVOlH_L_0k7s7wX9jN26I8ml22qBAabhR64mc4QLFMMXrv9ihI5xoFBVWWFAiPem8XTX2HQ5_er8H8mj_K1LKaW_i5qIF4cejJrcwh3Rhiin2KrxNA8gVlcelbVZqMTY-OWKqkH66Cjw/s640/Kevin+East+fundraiser+18.8.17.jpg" width="640" /></div>
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">The plaque is to be placed on the side of a specialised freezer unit
used for medical research, which the donation money helped to purchase. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">Huge thanks and eternal gratitude go to Debby and Ryan for such a kind
and generous donation. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">Due to the success of the day, the event is to be held as an annual
extravaganza, in Kevin’s memory.</span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="994" data-original-width="560" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfb9uSUgBV1Y291fF_k3y4fms0a_dhRjY567dzoo99LTsLevx_TJ6URiS5SFp-8t_VrQLR-PXQQhUIpS_JlLdntxrHCIhciNHB-kYFv81tKIt9V3EHXUUWPUVgoyLnHL3gv4zVeO8ZOYI/s320/Kevin+East+service.jpg" width="180" /></div>
</div>
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</div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">I had the pleasure of meeting Kevin, at the Scleroderma Unit, several
months prior to his passing. We were at the medical imagery department, having
photographic images taken of our disease progression. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">Seeing the tightness of Kevin’s skin, took me back to my initial year of
diagnosis, 1997.</span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">I remember showing Kevin that I could now outstretch my arms and my skin
was slowly regaining its elasticity. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">We joked together that, at least we now had a ‘claim to fame’, as Prof
Chris Denton had requested the images, with view for future use within a
hardback educational book about scleroderma. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">This aspect of fellow patients dying from their disease progression, is
exceptionally heart breaking and hard for me, to take in, and of course, my
prayers are with their families. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">However, I know that I am blessed to have made it to my 21<sup>st</sup>
year. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">This super charges my personal efforts in utilising my skills in the best
way which I can to help achieve the / my ultimate dream – a Scleroderma Free
World. </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">Huge thanks to Debby, family, Ryan MacDonald and other friends, for
their amazing fundraising donation and their fundraising efforts.</span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;"></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqiT9hqg-SohM57MI2hcpnd1iWQNbsxprGy-vGKLH60Pra-10je-mDArmjvF6ZKKm1l3Wu3ePJI_IXTzOcdRyCxxApyTPRX4T5UnUjLOARyUklLNA9G0VL8i-dGfDX1EZXm1xKsIthQk4/s640/2018+Symptoms+feels+like.jpg" width="640" /></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="423" data-original-width="719" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcQXW33MEZwnFXdQ-H1IuBa5sfyon1WzA3vWe5asSF-oEyxJuQxUS4DfxC-XqChJCg3O24QwVX2Cwx9rASOOuf57mBoYoPfWUISEl4gwG9PEDPcFHxVIwTyJqWI9ZL7ZlZ5Sq-YtT2XFc/s400/Living+the+dream+scleroderma+style.jpg" width="400" /></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">Current <b>Unmet Clinical Needs</b> 2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"></span></div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">CALCINOSIS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"></span></div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">GUM RECESSION, TOOTH
EXTRACTS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">SOFT TISSUE, ULCERS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">TELANGIECTASIA,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">SCLERODACTYL HANDS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">INVISIBLE
DISABILITY, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/invisible-disability-unmet-clinical.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">RAYNAUD'S, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">GASTROINTESTINAL,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="960" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEt2DPVzFJkWHXonhIs-wg7b98959Nb4lr22oDccJkfVFgBL4kbjkRf8teEEwfZPX1_B-MS0lwWhCdaXhyG74uqNcC-VcCQeQmv5zEA1m3QoCaO7jUSZgGtvM4Jqsra9YcNQhc2nbVtMk/s400/NW+2018+Awareness.jpg" width="400" /></div>
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</div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span>
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</div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Global Patient
Profiles Campaign Index, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/index-scleroderma-raynauds-awareness.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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</div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of Medical
Research and Awareness Raising, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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</div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-3-medical-research-areas-of.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-2-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-1-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/why-research-and-patient-profiles.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Global Patient
Profiles Campaign Introduction, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'Being your own
awareness advocate', Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/living-dream-being-your-own-raynauds.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness
Month Flashback 2017, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/flashback-scleroderma-awareness.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness
Month Flashback 2016, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/june-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My 2016 Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-2016.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Campaign Video, Click
<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/scleroderma-awareness-month-2016-atoz.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">March 2018 Autoimmune
Disease Awareness Month, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/03/scleroderma-march-autoimmune-disease.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTQGRzLv338JJn-8BkTe54QYunNCosvY0nZIbhoU1YZAeqKnqay4JfiouHRTiBcmycO7WCGHncJSfxNYtq684JGWrlMMHSDl0qgwopyH4dy-iQZq3ZTw_E9UA5eSZx6owUMYGYTkOKHH0/s640/WSD+2018+April.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
<br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver MEP for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><br /></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view my article 'Why Global Collaboration is Important', Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/03/why-global-collaboration-is-so.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>All</b> patients included within the global patient profiles campaign, highlight the <b><span style="color: red;">URGENT</span></b> need for an <b>investment in medical research</b>, as well as: </span><br />
<br />
</span><br />
<div style="text-align: center;">
<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Early Diagnosis </span></b></span></div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres </span></b></span></div>
<div style="text-align: center;">
<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></b></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>Access to innovative medicines</b></span> </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>ALL </b>being, crucial factors for best practice management and care. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles:</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk8dbYkGayrolSMluKay-AcC3Bc-LIg_kyaNmSkJoV9ylu9by-lR-Yv-3WamHbK7rf-RsZBv_L0EH9djkbBQ9ZYDa_B09x4-N8BlGOGgv2qMAFJQSXkl1TjKm6jTuodSRsmlPt0dttl6g/s400/2016+Day+30.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKw7g5PkwKow5qJreG8K5ZEzXmXD1vKcBXYbjBA3j-LY7m9Nw_nQaQv5QIXugRaIfyik7KaxRYkUSKBQ1Ci8Z1UMA655BUdoIt0jHRoiSPl3pYFx4q2cWXFFEwJiivsxp5VRNdHJSZ_SA/s640/RURF+thermo+awareness+2017.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td style="text-align: center;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ZuswSyFmIIiUZ8QSx5VDCl1jwi_i-7CDHPBfNh5Ma-dAy-aeU6Qw2QJ0p-Y3iJVK3AcBPUV44Fte6LauyuS0kmmOKgJYydhHVXC-R6gYnr9TkeCw5lXlT-RK4vmsh3zlXbAyPQ-5rgU/s320/NW+%252B+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="176" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">I am eternally grateful to the global scleroderma
trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and
dedication to unlocking the scleroderma enigma, is nothing other than,
superhuman. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work
ethic. I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self
employed practising barrister. Further to having been told in 1997, by my
diagnosing doctor, that I was looking at a 15month prognosis. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">For latest updates follow: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="color: blue;">Raynauds Scleroderma Awareness Global Patients</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Twitter: @SclerodermaRF @RaynaudsRf </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Google Plus: <a href="https://plus.google.com/communities/115644437712711107914" target="_blank"><span style="color: blue;"><span style="mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">RaynaudsSclerodermaAwarenessGlobalPatients</span></span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld
#RaynaudsFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Living the dream, scleroderma style. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical research at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit, The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
research purposes <b>only</b>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">No wages or admin costs. Thank You.</span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#HOPE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: June 2018</span></div>
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<br />Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-80962142123013683622018-06-27T00:16:00.000-07:002018-06-27T00:16:01.278-07:00Kelli Schrag, USA. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnv5hGjxEYEliCHWifJu3AtBBZ319tQa7dXgkxnKwd5P0uAnrxqBJLsgQl7AmMYsjtN3r7jgfZ6ohKySSpx_pUybZE7wp-1Cau8wbxrZw73keVhWcqMp-GhKvgKpmvd3EZGljD1NEDqQs/s640/2018+Kelli.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Kelli Schrag, USA.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness Month 2018.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's, Autoimmune Rare Disease.<span style="mso-spacerun: yes;"> </span></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFG-hjyNjF2pAcfZaWrzkVVQt2W4SzERa4rpaslnIhq_kk2iFtN-WdHujryP4cehl1zL38ldc7tL7B4zIMO7Z8RTipDCUA6arW6NG40_tIQjwtVj59mudKV-RO7uMqwndOVkYzJcsyNWw/s1600/18745391_10154901321009864_323902560_o.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1184" data-original-width="666" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFG-hjyNjF2pAcfZaWrzkVVQt2W4SzERa4rpaslnIhq_kk2iFtN-WdHujryP4cehl1zL38ldc7tL7B4zIMO7Z8RTipDCUA6arW6NG40_tIQjwtVj59mudKV-RO7uMqwndOVkYzJcsyNWw/s640/18745391_10154901321009864_323902560_o.jpg" width="360" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><span style="font-family: "arial" , sans-serif;"><span style="font-family: "arial" , sans-serif;">Kelli Schrag, USA</span></span></span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Name: Kelli Renee’ Schrag </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Location: Amarillo, Texas, USA </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Diagnosis: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Limited (CREST) Scleroderma </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Secondary Raynaud’s Phenomenon </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Peripheral Arterial Occlusive Disease </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Triple X Syndrome (47, XXX Chromosomes) </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Year of diagnosis: October 2012, May 2014 </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Age of diagnosis: 32 years old, 34 years old </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Where/who diagnosed you? </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma, Secondary Raynaud’s Phenomenon - Dr. Mortansen, Rheumatologist at Via Christi Clinic in Wichita, KS in 2012. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Limited Scleroderma - Dr. Ashima Makol, Rheumatologist at Mayo Clinic in Rochester, MN in 2014. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Peripheral Arterial Occlusive Disease - Dr. Robert McBane, Vascular Doctor at Mayo Clinic in Rochester, MN in 2014. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Triple X Syndrome: 47, XXX Chromosomes - Dr. Charles Coddington III, Endocronologist at Mayo Clinic in Rochester, MN in 2014. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What were your presenting symptoms? </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">When
I was a child I had broken arms and in my 20’s I had issues with my
bones fracturing in my feet, rolling of my ankles when walking, and the
ball of my foot hurting when I walked. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In 2004, had bone loss in my lower mandible due to an aneurismal bone cyst. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
remember during college breaks from 1999-2004 in the winter, I worked
in maintenance and my hands would turn purple and often go numb. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">No one ever seemed too concerned about it, but my hands would take a long time to warm back up. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I continued working outside after college until 2010, when I chose to stay at home with my two children. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
remember when working in the flowerbeds and pulling weeds, my hands
would get stiff and I had some indentations in one of my fingers from
writing. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">After giving birth to my son in 2008, I had a pinched sciatica nerve and I began having issues with Carpal Tunnel. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In the winter of 2011, my hands started turning white with no reason or temperature change. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
2012, after running in a 5K race, my sciatica nerve was pinched again.
My fingers continued to turn red, white, and blue into the summer
months, where they also started going numb. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My
hands started to swell and were mottled, with red and yellow, and red
surrounding my cuticles. I had 4 miscarriages from 2007-2012 with 2
healthy pregnancies during that time. </span></div>
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<br /></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">How long did it take for you to be diagnosed after first symptoms? </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2 months and 1 ½ years for being diagnosed. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
never realized what was causing all of my symptoms listed above but,
after staying home and not working, I was seeing Dr. Derin Dopps, my
Chiropractor in Wichita, KS in August 2012 and after having 2
miscarriages in a row and my fingers turning red, white, and blue in the
middle of the summer, he recommended that I go to a Rheumatologist, as
he thought I had Raynaud’s Phenomenon. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
scheduled an appointment with my Primary Care Physician, Dr. Ronald
Stevens at Via Christi Clinic in Newton, KS as I had to have a referral
to see Dr. Mortansen, Rheumatologist at Via Christi Clinic in Wichita,
KS. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
had to wait 2 months after this appointment, to get into see Dr.
Mortansen. He took 22 vials of blood for lab work and x-rays of my
chest, hands, and feet and the lab work was sent to Mayo Clinic in
Rochester, MN. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It
took 2 weeks to get my results back from Dr. Mortansen and the lab
results showed Scleroderma and Secondary Raynaud’s Phenomenon. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">His
office sent me a pamphlet of information on Scleroderma and in the
pamphlet it had recommendations to have an Echocardiogram done
annually. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">There
was no follow up. I was just told to watch for symptoms, but I wasn’t
sure as to what symptoms I should be looking for, as it was all a shock
to me with no added information. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
was left with nothing, which resulted in my checking the internet for
answers which is where I found that most people don’t live past 40 years
old when they have Scleroderma. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had lost hope and became very stressed with no information given to me following the diagnosis. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The
Digital Tip Ulcers with basal line haemorrhages on my cuticles and
fingernails started in January 2013, shortly after being diagnosed. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
began seeing Dr. Brett Nedich, a new Primary Care Physician and Dr.
Mortansen for these ulcers. The ulcers took 6 months to heal and 3
months later I had another one. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Dr.
Mortansen recommended that I not eat cold foods, such as ice cream in
fear it would cause Esophageal issues in time, and to wear warm gloves
to keep my hands warm to help prevent the ulcers.</span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"> </span><span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br />
</span></span></div>
<div class="MsoNormal" style="line-height: normal; text-align: justify;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH0imkLUjsTGfckY1LyYeQWrCbgTeXbwNDtGjWBvxg1Vuq6kBOSdV6nQ9sfym94fmo6LcZsTADrliZo4fgDviBcvFQxaW1KKGd8IU05zn3AnrLk4lNRkwnjZFpbFHiV_hwsgMhgnpz6iI/s1600/RSA+global+-+digital+ulcers.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH0imkLUjsTGfckY1LyYeQWrCbgTeXbwNDtGjWBvxg1Vuq6kBOSdV6nQ9sfym94fmo6LcZsTADrliZo4fgDviBcvFQxaW1KKGd8IU05zn3AnrLk4lNRkwnjZFpbFHiV_hwsgMhgnpz6iI/s640/RSA+global+-+digital+ulcers.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks to Kelli for sharing her digital ulcer images</span></span></td></tr>
</tbody></table>
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">After having several digital tip ulcers for the following year and a half, I began to get hopeless and depressed. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The
pain from the ulcers was excruciating and I wanted to just quit living.
I reached out to my family, friends, and most of all God and I began
seeing things in a new light and seeking out other doctors with a
holistic approach, using food as medicine. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
2014, I began seeing a Nutritionist and in May of 2014, I went to see
Dr. Jeffrey Davis at Prairie Health & Wellness in Wichita, KS as he
was a holistic medicine doctor and he referred me to Mayo Clinic in
Rochester, MN. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">At
Mayo Clinic, I saw a Rheumatologist, Dr. Ashima Makol and she did
several blood tests including an ANA Centromere Test and she diagnosed
me with Limited (CREST) Scleroderma. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
also saw Dr. Robert McBane, a Vascular Doctor at Mayo Clinic who did a
Vascular Study and diagnosed me with Peripheral Arterial Occlusive
Disease, and Dr. Charles Coddington, an Endocrinologist, at Mayo Clinic
who did Genetic Testing on me and diagnosed me with Triple X Syndrome
(47, XXX Syndrome), which may have been the cause of the 4 miscarriages.
</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Reality: </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
currently have no digital tip ulcers, only scarring on 3 of my fingers
from old ulcers. I am taking 4.5 mg LDN (Low Dose Naltrexone), but my
doctor would like to see how I do off of the medicine since I’ve been on
it for 15 months now. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
started the LDN in February 2016 gradually to help with my symptoms as I
had heard that it had been beneficial to others with autoimmune
diseases. It has helped tremendously! </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Once
I started taking the LDN, I began to notice I could do a lot more with
my hands! My hands had caused me to not be able to function or work very
well and with the LDN I was able to actually use my hands, do office
work, close my fist, type, write, meal prep, cook volunteer, hold a book
without my hands falling asleep, and lots more! </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For
the past 2 months, I’ve used an Infrared Sauna daily for 30-45 minutes
to help my body to detoxify and to heal. I had a spot on one finger that
I was concerned about developing into an ulcer, but it is completely
gone after the use of the Infrared Sauna! </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My
hands tend to swell and are always mottled with red and yellowing in
color and my fingers are red around my fingertips and cuticle area. I
tend to get Raynaud’s attacks when it is cold, they are in pain, and in
stressful situations. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
am currently doing an Elimination Diet to rid my body of added toxins,
as I have become very sensitive to many different foods that I eat and
ingredients that touch my skin. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
am allergic to Wheat, Gluten, Dairy, Chicken, Onions, Candida, Eggs,
Corn, Tomato, and many other things. Histamine foods cause a lot of
bloating and inflammation within my digestive tract. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
get constipated and have haemorrhoids when certain foods are eaten. It
is hard to stick with a diet when I never know what may cause an issue
with my body. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
drink Zeal by Zurvita as a supplement to help provide my body the
antioxidants and nutrients it needs and Vegan Shakeology by Beachbody to
provide my body with a protein and additional antioxidants and
nutrients that my body is unable to get from having so many allergy
sensitivities. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
take 2 Tbsp of BRAGGS Apple Cider Vinegar, 4 oz water, ½ squeezed lemon
juice, and 1 Tbsp Honey 2-3 times a day to help my digestive issues. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
take a Probiotic with 100 billion Live Cultures and 16 strains of
bacteria, 3g of Krill Oil to get my Omega 3’s to help with joint pain,
Vitamin E to help get healthy fats in my body, DHist to help with
allergies, 120 mg Gingko biloba to help with the Raynaud’s Phenomenon,
250 mg Strontium citrate to help with bone health due to significant
bone loss in my lower mandible due to being allergic to the metal oral
implants I had placed in my mouth in 2006, 1000mcg Vegan Vitamin K2 to
help with bone health, and 150 IU Vitamin E Oil as an antioxidant. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My
mouth used to be very dry and now it is moist after having the metal in
my mouth removed from the oral implants, screw, and crowns. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I use Peroxyl and Himalaya Herbal Toothpaste for my oral care. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have had the following annual tests done, since being diagnosed in 2012: </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Pulmonary Function Tests to check my lungs, </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Echocardiograms to check for blockages in my heart, </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">and Chest X-rays to check for blockages. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">All tests have been normal with a small blockage in my chest. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
had oral surgery in March 2017 to remove my oral implants, a partial
screw that had broke when the oral surgeon was trying to remove it in
June 2016, and crowns of 5 teeth in my lower mandible that were placed
in 2006, due to a metal allergy to Titanium dioxide, Titanium sulfate,
and Vanadium that I was tested for in November and December of 2016 with
Neuroscience Pharmasan Labs MELISA Metal Allergy Blood Tests by my
Primary Care Physician, Dr. Eric Ehle. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My hair has been falling out a lot which may be due to detoxification of the oral surgery and the metals, but I’m not sure. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
have varicose veins on my right leg and ankle that can become painful
and swollen at times when I walk and sit for long periods of time. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have red dots on my face and along my cuticles on my fingernails, which could be Telangiectasia. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
have low back pain, shoulder, and neck pain a lot, which I see my Dr.
Eric Ehle for and he does chiropractic work on me and acupuncture. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
have Raynaud’s Phenomenon and wear mittens almost all year round, but
I’ve noticed I haven’t had to wear them as much since I had the metal
removed from my mouth. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
have vertical ridges and very small moons on my fingernails. My house
is kept at 75 degrees, if it is below 73 degrees inside or outside, I
get too cold and have to dress like it is freezing outside. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
am currently seeing Dr. Ehle as my Primary Care Physician and his
Nutritionist in his office, to help me figure out what foods would help
me to absorb more nutrients and which ones to get rid of to heal my
gut. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
no longer take the Tracleer as it was recommended by my Primary Care
Physician to remove it before my oral surgery. I noticed no difference
in removing the Tracleer and my current condition remained well. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
have since had the Paraguard Copper IUD removed that I had placed for
taking the Tracleer medication to prevent pregnancy and birth defects
and I no longer have to have monthly liver function tests or pregnancy
tests. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">After
stopping the Tracleer, I did not have my menstrual cycle for 51 days,
and I had done a pregnancy test 1 month following stopping the
medication, and the test was negative, so my body may have just been
adjusting to the medication not being taken. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
still am very careful with what I put on my body as I develop hives
easily, if I have an allergy to certain ingredients, especially alcohol,
latex, grape seed oil, and rosemary extract. I have more energy than
before and am able to exercise more. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My face structure has changed, since having the oral surgery, in a good way, as my jaw line looks straight and not slanted. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am able to continue volunteering at the school my kids attend and the church we attend. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
have had several doctors and specialists since 2012 and have become my
own advocate in trying to find the best person to care for me. I have
currently found that with my current primary care physician, Dr. Eric
Ehle, Well Life Family Medicine in Amarillo, TX, and by the grace of God
to get me through this fight! </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In June 2015, I started a <a href="https://www.facebook.com/healinglovingsclerodermawithrealfood/" target="_blank"><span style="color: blue;">Facebook Page</span></a> with Nicola Whitehill as an Admin, and my blog <a href="http://healinglovingsclerodermawithrealfood.blogspot.com/" target="_blank"><span style="color: blue;">healinglovingsclerodermawithrealfood.blogspot.com</span></a>
to help keep others informed about my health, and to help them, to also
use food as medicine, and to help them to continue fighting and being
their own advocates in this fight for a cure for Scleroderma! </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
would like to incorporate juicing and bone broth into my diet to help
heal my gut! And I am excited to see what my body does as I continue to
heal after the oral surgery I had in March of 2017. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I haven’t been able to work since 2013, when I got the digital tip ulcers, but I would like to look into it. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
would not have been able to type this or write with my hands between
2013 and 2016, due to the digital tip ulcers I was getting. Here is what
happened during that time: </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">DIGITAL ULCERS:</span></b></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
2013, when the digital tip ulcers started, I began seeing Dr. Brett
Nedich as my primary care physician and he had no clue what to do about
the digital tip ulcers and found pictures on the internet to show me
what they could be. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">He
referred me to a vascular doctor to have an Echocardiogram done and
after the test came back normal, he had me have a Transesophageal
Echocardiogram (TEE) Test done to check my heart for blockages. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">There were no signs of a blockage to cause the digital tip ulcers. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My
rheumatologist, Dr. Mortansen recommended that I use Nitrobid for my
hands to improve circulation and to take Slo-Niacin to help me to stay
warm with the side effects of hot flushes, they were not very pleasant. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I stopped the Slo-Niacin, but continued to use the Nitrobid. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My
rheumatologist also had me take 80 mg aspirin and Amlodipine daily. I
continued to get ulcers that lasted 6 months and would return on another
finger 3 months after that and I had to stop my small home business
selling Premier Designs Jewelry as I was homebound due to the weather
and the pain in my hands. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
wanted more answers about why my body was continually getting the
digital tip ulcers. After being severely depressed and stressed and
almost committing suicide, I found support from my husband, family,
friends and especially God. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
realized this fight was more than I could handle and I needed to put my
complete faith, trust, and hope in God to get me through it. After I
made that decision, I began seeing things in a whole new light! </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
2014, I began seeing a Nutritionist, Dr. Patrick Garrett in Newton, KS.
He helped me understand why my body may be doing some of the things it
was and we found more sensitivities that my body had towards food and
things I applied to my skin. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
March 2014, I had a Comprehensive Food Panel done, called an IgG ELISA
blood test to check what foods caused the highest amount of inflammation
in my body. I was using MediHoney on the digital tip ulcer as it was
recommended to use Manuka Honey as a healthy alternative to healing
wounds. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
also stopped seeing my primary care physician and I began seeing a
Holistic Medicine Doctor, Dr. Jeffrey Davis at Prairie Health &
Wellness in Wichita, KS, and he became my Primary Care Physician. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">He
referred me to Mayo Clinic to get further diagnosed. Dr. Robert McBane,
is my Vascular Doctor at Mayo Clinic and after doing a vascular study,
they diagnosed me with Peripheral Occlusive Arterial Disease of the
Upper Extremities due to a blockage in my right pointer finger where my
fingertip was permanently purple from the lack of blood flow. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Dr.
McBane took a conservative approach to start with by prescribing an
Intermittent Arterial Compression Pump to help pump oxygen into my arms
and provides blood flow to help my hands to heal from the digital tip
ulcers. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
was to wear the cuffs and run the pump for 8 hours/day when I had the
ulcers and 4 hours/day for 3-6 months without the ulcers. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Dr.
Ashima Makol, Rheumatologist at Mayo Clinic, had me switch to taking
Nifedipine instead of Amlodipine, as it wasn’t working. Dr. McBane also
recommended that I use Iodosorb for the digital tip ulcer to debride the
wounds. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Iodosorb was $60 a tube and insurance would not pay for it, so I never used it during the time I had this digital tip ulcer. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">While
I was at Mayo Clinic, I saw an Endocrinologist to do genetic testing to
see why I’ve had so many miscarriages, 4 total and why I’ve had 2
healthy pregnancies during that time. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It was found that I have Triple X Syndrome (47 chromosomes, XXX Syndrome), which could be the cause of the miscarriages. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">After
leaving Mayo Clinic and continuing the usage of the Intermittent
Arterial Compression Pump, the digital tip ulcer began healing. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
continued the pump after the healing of the digital tip ulcer as
recommended. I had trouble with insurance covering the Intermittent
Arterial Compression Pump as it was seen as experimental. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The
stress of that, and all that was going on, created another digital tip
ulcer and it was recommended that I see Dr. Shirley Wang, a
Rheumatologist in Wichita, KS. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">She
recommended that I take Plaquenil, but I did not take the medicine as
my primary care physician didn’t recommend it as it was just covering up
the symptom of inflammation and there were ways to address that besides
using a medicine as a band aid for the symptom. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had allergy testing done by Dr. Jeffrey Davis to determine what foods I needed to stay away from as well. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Dr. Shirley Wang recommended that I take Sildenafil (aka Viagra), which I did take, but I didn’t notice a difference. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
began seeing a hand doctor as well in Wichita, KS and it was
recommended that I not go outside if the temperature was below 40
degrees and to keep my body covered as I could risk losing my fingers or
toes from gangrene. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
had not had any issues with digital ulcers on my toes, but I’ve had
issues with cold feet and mottled yellow and red colors on the bottoms
of my feet. I researched the medicine Tracleer, also known as Bosentan,
and found that it could be taken to prevent digital tip ulcers. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">After
lots of paperwork and having an IUD placed as a requirement for taking
the medicine, Dr. Shirley Wang prescribed the medicine to me. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
January 2015, I had severe pain in my Left ring finger and both hands
turned grey and white in color and I went to the Emergency Room where
they gave me Morphine for the pain which didn’t even touch it with the
first dose and had to give a second dose to take the pain away. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Dr.
Shirley Wang, my Rheumatologist, sent me in for a bone scan where it
was determined that I had Osteomyelitis, a bone infection, in my finger.
</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">They
put me on 6 weeks of IV antibiotics that I gave myself at home through a
PICC Line that they put in my upper Right arm. I went in weekly to have
it checked and to have the bandage changed. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Then
I continued with 3 weeks of oral antibiotics. I was also seeing a wound
care doctor, Dr. John McEachern in Newton, KS. They used a pain
medicine that they rubbed on my finger that caused a Raynaud’s attack. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">They
also gave me bandages to use to change daily, called Medipore Tape and
Mepilex Bandages to help with the healing of the digital tip ulcer. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">After
seeing the wound care doctor, it was too painful for me to allow them
to touch my finger and care for me, so I began my own wound care at home
and I bought Iodosorb, Mepilex Bandages, and Medipore Tape from the
website www.allegromedical.com for a fraction of the cost. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">During
this time the digital tip ulcer on my finger began to heal, although it
has left a scar and all my good and bad bacteria was gone. So I had to
rebuild my immune system from all the antibiotics. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
June 2015, I started the Facebook page Healing Loving Scleroderma with
Real Food with Nicola Whitehill as my Admin to keep others informed
about my health, inform others about Scleroderma and using Food as
Medicine, and helping others to continue fighting and being their own
advocates in this fight to find a cure for Scleroderma. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">During
this time, I began Juicing following a 28 day plan by Jason Vale and I
continued it for 2 more weeks after the 28 days was complete. I felt my
best during this time, with occasional Raynaud’s symptoms. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The
inflammation decreased significantly and the joint pain was gone! I
felt amazing and my skin looked great! I was able to exercise and lose
weight! I went to Mayo Clinic for a follow up and the doctor’s told me
to keep doing what I was doing with the juicing. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
had a spectra cell test done to see what nutrients I needed and the
results showed that I wasn’t absorbing the nutrients from all the juice I
was taking in, from the fruits and vegetables. My Primary Care
Physician, Dr. Jeffrey Davis recommended several supplements and that I
incorporate more fibre and lean meats in my diet. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
continued to juice, but eventually stopped as it was hard to keep up
with the supplementation and the juicing with 2 children and a family as
we were preparing to move to Amarillo, TX for a new job for my husband
as we were looking for a place that was warmer than only 3 months out of
the year. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
October of 2015, my family moved to Amarillo, TX and I had developed a
digital tip ulcer when my husband moved here in September 2015. I had
trouble getting into see a Rheumatologist and get established with a new
doctor, which was an awful experience as no one could see me very soon
being a transfer and no one in Kansas knew any doctors that specialized
in Scleroderma care. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Not
having a doctor resulted in me using the bandages, Iodosorb, and Manuka
Honey to do my own wound care at home. I am thankful that changing my
bandage and dressing on my digital tip ulcer twice daily was very
beneficial and it healed in 7months. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It
was hard to get a doctor, let alone one, to prescribe the Tracleer
medicine, as it wasn’t a medicine the Rheumatologists here were familiar
with. I was able to continue the Tracleer as it was prescribed from my
Rheumatologist in Wichita, KS and covered under Pathways Insurance. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">After
several months I was able to get into see a Rheumatologist, Dr.
Christopher Wright. He prescribed Sildenafil (aka Viagra) to help with
the Raynaud’s in March of 2016 and he referred me to Dr. Bruce Baker, a
Pulmonologist at the Diagnostic Clinic in Amarillo, TX to have a
Pulmonary Function Test done and to Dr. Daniel Beggs, a GI Doctor at the
Diagnostic Clinic. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Dr.
Beggs said they could do tests on my GI Tract and could prescribe
antibiotics. I told him I would like to wait as I didn’t want a band aid
to manage a symptom. Dr. Baker did the tests and was willing to
prescribe the Tracleer for the digital tip ulcers as Tracleer is
normally used for Pulmonary Hypertension. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
had been taking the Tracleer as a way to prevent the digital tip
ulcers. I continued having liver function tests and pregnancy tests done
monthly as Tracleer could cause liver failure and severe birth defects.
My liver function stayed normal during this time and I did not become
pregnant. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
February 2016, I began taking LDN, Low Dose Naltrexone prescribed by my
primary care doctor in Wichita, KS. I began looking for a holistic
medical doctor that would see me as it wasn’t convenient having a doctor
6 ½ hours away. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
began seeing Dr. Eric Ehle at Well Life Family Medicine in April of
2016. It has been a relief as I have found someone that wants to help my
body as a whole and not just putting a band aid on the symptom and
taking medicine all my life. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">After
seeing a new dentist in Amarillo, TX, I was referred to Dr. Aaron
Adkins, D.D.S. in June 2017, who did a deep cleaning on my lower
mandible teeth as I was having severe swelling of my gums and recession
of my gums around several of my teeth and a cold sensation when it was
windy outside. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">During
this cleaning, they surgically removed a part of a metal screw that
broke in my lower mandible during surgery that was placed in 2004 from a
bone graft that I had done. The bone graft was put in after I had an
aneurismal bone cyst removed that caused significant bone loss and the
teeth to be decayed inside. After the cleaning and the removal of part
of the screw, the swelling returned. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
August, I stopped taking the Sildenafil as it wasn’t helping prevent
the Raynaud’s attacks and we began trying Acupuncture on my hands and
body to help relieve the symptoms of the Raynaud’s that I was having. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
September, I had a bad fall and bruised my tailbone. The joint pain
continued and it was harder to get out of bed. My pelvis had to be
readjusted with several adjustments by Dr. Eric Ehle and acupuncture was
done to help with the healing. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
November and December 2016, I had MELISA Metal Allergy Testing done
with blood tests to see if I was allergic to the metal in my oral
implants as the swelling around my gums continued. The MELISA Metal
Allergy Tests showed that I was allergic to Titanium dioxide, Titanium
sulfate, and Vanadium all of which were in the makeup of my oral
implants and crowns. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My
primary care physician, Dr. Eric Ehle and dentist, Dr. Jack Fong,
Amarillo, TX were concerned with my immune system with me having
surgery, since my husband and I, decided that I should have the metal
removed from my mouth. It was recommended that I have IV Therapies done 5
times with added supplementation before and after surgery to help my
body to heal after surgery. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The
IV’s were hard to place for the nurses as it took 2-3 sticks before
they could hit the vein due to my Raynaud’s attacks during this process,
the pain, and my veins rolling on them. They used a small needle as my
skin in this area is tight. Once the IV was placed, I warmed my body
with a warm electric blanket and mittens. </span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Once I was done with the IV supplementation, my body was warm and I was tired for about 2 days after the IV Therapy. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">After
that, my body had adjusted to the nutrients it was given. I also
increased my supplementation of added nutrients and continued taking
Vegan Shakeology to get the added antioxidants, nutrients, and protein
in my diet to prepare my body for surgery. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
February 2017, my immune system was not functioning correctly and my
primary care physician, Dr. Eric Ehle did a N.A.E.T. Treatment with
Laser Acupuncture and Auricular Acupuncture to try to desensitize my
body from the different allergies and allergies to the metals. This
procedure began to make me drained and very fatigued. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">He
recommended that I have a GI Stool test done as I was having GI issues
in February 2017, to check for parasites, pathogens, bacterial flora,
and fungi/yeasts. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The
results showed that I had a Bacterial Pathogen called Salmonella, high
amounts of normal bacterial flora, called Enterococcus spp. and
Escherichia spp., 2 parasites called Dientamoeba fragilis and Endolimax
nana, and 2 types of fungi/yeasts called Candida spp. and Geotrichum
spp. The doctor recommended that I take Tanelbit and Phytostan to get
rid of the Candida as that was the main concern at the time. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In
March 2017, Dr. Bryan Bailey, D.D.S. an Oral Surgeon in Amarillo, TX
removed my 4 oral implants, the rest of the screw that was left in my
mouth in June 2016, and the crowns that covered 5 of my front lower
teeth. The metals in my mouth had corroded and were described as if I
had a car battery in my mouth with the electrical currents and saliva. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
had significant bone loss in my lower mandible once again. My dentist
constructed a temporary partial plate made out of nylon and plastic to
see if I noticed a difference after the metal was all removed. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
used a homeopathic protocol before and after surgery to help with pain
and used TRF 350 and Strontium to supplement my body. My body has healed
very well and I have continued supplementation to help build my immune
system back up. I also had a very dry mouth before this surgery and now I
don’t have a dry mouth. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As
of right now, I feel as though I am on the right track to healing and I
would like to see more research being done to use Food as Medicine and
more knowledge from doctor’s as to how to work with those of us that
have Scleroderma to increase our quality of life without giving us
another medicine to put a band aid on the symptom. Help us as patients
learn to manage the symptoms in ways that are beneficial to our bodies
as a whole! </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My 3 biggest <b>current challenges</b> due to my diagnosis? </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Gastrointestinal
problems causing a compromised immune system due to leaky gut and
figuring out what is best to rebuild my immune system to heal and
staying away from foods that cause allergies </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud’s
Phenomenon with red, white, and blue fingers with cold, pain, and
stress along with swelling in my fingers and hands causing my hands to
be tight and mottled in color with dry cracked cuticles and red dots
along my cuticle lines </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Bone loss due to dental problems </span></div>
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<br /></div>
<br />
<div class="MsoNormal" style="line-height: normal; text-align: justify;">
<span style="font-size: x-small;"><span style="font-family: "arial" , sans-serif;"><br />
</span></span></div>
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<span style="font-size: x-small;"> </span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What are your <b>3 top tips</b> for living with your diagnosis? </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Research your diagnosis and how to manage your symptoms holistically. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Be your own advocate and keep searching for the best way to care for yourself. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Live simply by learning to say no to stressful situations and pray and trust that God will heal you. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Manage your symptoms consistently and follow-up with annual tests and your doctor to get the best care. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What are you <b>3 wishes</b> for the future? </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Doctors,
Specialists, & Dentists that know how to care for their patients by
looking at the patient as ‘a whole’, and seeking out the root cause and
finding ways to care for them, instead of just giving medicine to put a
band aid on the symptom to avoid car-ing for the individual patient. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">There would be a cure using food as medicine and a known cause of why the dis-ease affects those with the disease. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Health
Insurance would cover what is needed to benefit those of us dealing
with the disease as that causes unneeded stress and makes symptoms
worse. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">June 2017. </span><br />
<br /></div>
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<br />
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<img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkUL9wVFS3xSPuwy7-zaz6UEJ8Yv9LdpgxnwcyFyUsE202eU0D37n6UUVJGXDO3GJiNrH22ITuuPAbYzPV1eC3nlrzf72w75iFVbBCGxg1lmRp-0CT7AD0sYvwtksq4MhlTAC5g0YuN0g/s640/Kelli+Florida.jpg" width="480" /></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">2018 UPDATE: </span></b></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">My primary care
physician, Dr. Eric Ehle has recommended my next step is to detox my body and
to remove the rest of the mercury amalgams and replace them with composite
resin that is compatible to my body. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I’m currently in the
process of looking for a dentist that I trust to give me the best care to
remove my mercury amalgams in 3 phases as I'm so sensitive to metals and
several other things. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I have to allow my body
21 days or more, in between each phase to reset itself, and prepare for the
next phase. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">In addition to waiting
to find a new dentist, my periplex partial plate broke that replaced my oral
implants I had removed due to my metal allergy in 2016. It has now, been repaired.
</span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I also have been in for
a follow up with my vein doctor and he found some perforated veins in my ankle
that have caused swelling. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I will be having a vein
ablation done on those veins in July. While I wait, I wear Copperfit
Compression Socks at bedtime to help with the swelling. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I went to get my eyes
checked and as a symptom of Scleroderma I have dry eyes, I now am using Retaine
Dry Eye Drops twice a day to help my eyes have moisture. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I take 97.5 mg of
Nature Throid Thyroid medicine to help with my hypothyroidism (underactive
thyroid). </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I am taking supplements
that include: </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Vitamin D3 50,000IU
once a week, Probiotics 100 Billion Strains 1- twice a day, Sago-Palm (Vitamin
C) 500 mg 1-twice a day, D-Hist (for allergies) 2-twice a day, Magnesium
Complex 1-once a day, Vitamin E 400IU 1-twice a day, Lugol's Iodine 2 drops
once a day, Thorne Mediclear SGS Protein (detoxing) 2 scoops- twice a day. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I am exercising to help
my joints and build muscle. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">For the detoxing, I
have been drinking Thorne Mediclear SGS and I've noticed a difference! My
inflammation has decreased and I am eating better and not craving foods! </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I'm excited because I
have finally found a protein powder that I can actually drink without the food
sensitivities! </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">It has been a journey
to know what is best for my body, but I know it best! </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">My diet consists mostly
of vegetables, greens, fruits, berries, grains, nuts, seeds, and some meats. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I have food allergies
to corn, chicken, strawberries, cinnamon, and rye. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">My allergies have
changed over the years and I have become more tolerant of foods I once was
allergic to. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I’m allergic to several
medications since several of them have ingredients which are derived from corn.
</span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I am also allergic to
lavender essential oil, grapeseed extract, titanium dioxide which is also in
several medications, food, lotions. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I have to be extremely
careful what I put in and on my body. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I utilize the one
benefit Scleroderma gives me which is a nice tan in the summer months. I use
All Good Sunscreen to protect my skin. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Sometimes, I feel like
it is an obsession to know all that my body can and cannot handle, but I have
to take care of my body the best I can! </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Of course, I fall off
the wagon and get off track once in a while, but the important thing is that, I
get back up and keep fighting! </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">As always, it's best to
check with your doctor before starting something and being your own advocate by
knowing what your body can and cannot have! </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><div class="separator" style="clear: both; text-align: center;">
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<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I have a sore on my
right pinky finger that throbs with pain and is extremely painful when it hits
things. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I use manuka honey or Medihoney and a latex free bandaid, although I
don’t keep it covered all the time. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I had a month of not
taking </span></span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Low Dose
Naltrexone (LDN), but I have started taking it again as it helps with getting
rid of ulcers, and I’ve had this sore for a month now from a sliver. <span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">I will start with 1/2 a tablet per day as a loading
dose for a few weeks before moving up to 4.5 mg / day.</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I use a paraffin bath
to help get heat to my extremities which helps in the healing process. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I use Arnica montana
for pain medicine.</span></span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"></span></div>
<div class="MsoNoSpacing" style="tab-stops: 111.9pt; text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"><span style="mso-tab-count: 1;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">RESEARCH 2018:</span></b><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I have not participated
in a Clinical Research Trial. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I would only consider
doing one if it was using food as medicine to heal my body and through a
holistic approach.</span></span><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"> </span></b></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">IN BETWEEN MEDICAL APPOINTMENTS: </span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"><br /></span></b></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">I enjoy spending
time with my family. </span></div>
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<br /></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">I have just been to
Florida with my Mom and sisters. </span></div>
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<br /></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">Facebook Page ‘Healing
Loving Scleroderma with Real Food’, Click <a href="https://www.facebook.com/healinglovingsclerodermawithrealfood/" target="_blank"><span style="color: blue;">here</span></a>. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
<br style="mso-special-character: line-break;" /> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Huge thanks go to Kelli for sharing her scleroderma reality and experience in such detail, for Scleroderma Awareness Month. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Kelli
has shown huge tenacity with ensuring she has the best medical team
around her, as well as, thanks go to Kelli for all that she does for
sharing her experience, to help other patients, throughout the year. </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
had the honour of being a member of the medical team who devised the
NHS Guidelines for Digital Ulcer Management in Scleroderma, published
2015. Click <a href="https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/10/a13pb-sildenafil-bosentan-oct15.pdf" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqiT9hqg-SohM57MI2hcpnd1iWQNbsxprGy-vGKLH60Pra-10je-mDArmjvF6ZKKm1l3Wu3ePJI_IXTzOcdRyCxxApyTPRX4T5UnUjLOARyUklLNA9G0VL8i-dGfDX1EZXm1xKsIthQk4/s640/2018+Symptoms+feels+like.jpg" width="640" /></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="423" data-original-width="719" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcQXW33MEZwnFXdQ-H1IuBa5sfyon1WzA3vWe5asSF-oEyxJuQxUS4DfxC-XqChJCg3O24QwVX2Cwx9rASOOuf57mBoYoPfWUISEl4gwG9PEDPcFHxVIwTyJqWI9ZL7ZlZ5Sq-YtT2XFc/s400/Living+the+dream+scleroderma+style.jpg" width="400" /></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"> </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">Current <b>Unmet Clinical Needs</b> 2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"></span></div>
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</div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">CALCINOSIS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"></span></div>
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</div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">GUM RECESSION, TOOTH
EXTRACTS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">SOFT TISSUE, ULCERS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">TELANGIECTASIA,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">SCLERODACTYL HANDS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">INVISIBLE
DISABILITY, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/invisible-disability-unmet-clinical.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">RAYNAUD'S, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">GASTROINTESTINAL,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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</div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg5j4VsZEdHoMXAIOPfothODMqC0K08-wjRvvapARWlECOrMIrtdO8m9uv9dXKnpLqBfv_vFY3gcSE8igg_3FfQ8wf7U2gtlrz_n74LreCdX9y1sd-xqAJRvZJ9Pz6mbvWwTZh1Xo7vvw/s400/Kevin+East+fundraiser+18.8.17.jpg" width="400" /></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="1475" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQdiFk9DYiU4bSQYfr5zWOGv8U_HkeROAnY1-LDKN7VGKEZFEncEjt7DJ28rpi_PScWHd0wRzLSsWwPI0_U4LtaC-g2nroF6Fv_CQOeloZyuqjy6vt_yIevsumQAGm6yVu1XdA4W6dNsM/s320/Kev+East+family+and+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="294" /></td></tr>
<tr align="center"><td class="tr-caption"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof
Chris Denton presenting a plaque to Kevin's daughter, Michelle, and
wife, Debby, for funds raised in Kevin's memory for medical research at
the Unit. Thanks to Michelle for the photo.</span></td></tr>
</tbody></table>
<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/scleroderma-awareness-month-june-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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</div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Global Patient
Profiles Campaign Index, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/index-scleroderma-raynauds-awareness.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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</div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of Medical
Research and Awareness Raising, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-3-medical-research-areas-of.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-2-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-1-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/why-research-and-patient-profiles.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Global Patient
Profiles Campaign Introduction, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'Being your own
awareness advocate', Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/living-dream-being-your-own-raynauds.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness
Month Flashback 2017, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/flashback-scleroderma-awareness.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness
Month Flashback 2016, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/june-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My 2016 Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-2016.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Campaign Video, Click
<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/scleroderma-awareness-month-2016-atoz.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">March 2018 Autoimmune
Disease Awareness Month, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/03/scleroderma-march-autoimmune-disease.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<div style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTQGRzLv338JJn-8BkTe54QYunNCosvY0nZIbhoU1YZAeqKnqay4JfiouHRTiBcmycO7WCGHncJSfxNYtq684JGWrlMMHSDl0qgwopyH4dy-iQZq3ZTw_E9UA5eSZx6owUMYGYTkOKHH0/s640/WSD+2018+April.jpg" width="640" /></div>
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span><br />
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<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver MEP for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view my article 'Why Global Collaboration is Important', Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/03/why-global-collaboration-is-so.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>All</b> patients included within the global patient profiles campaign, highlight the <b><span style="color: red;">URGENT</span></b> need for an <b>investment in medical research</b>, as well as: </span><br />
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<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Early Diagnosis </span></b></span></div>
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<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres </span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>Access to innovative medicines</b></span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>ALL </b>being, crucial factors for best practice management and care. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles:</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhO4d8l0Ewau5DFa-fIjZI8AqblgvSY86a3_FErC-CJb7Tdo3z0AgqipbvBtjEP9-jI3usmsv-Y-7fh_SFhlzGoKThO-nF9Hzz4quCcLBSDOjRsbJkeOgxYfTQDQDctn1LSqlaeEd75Q/s400/NW+RF+27.9.17.JPG" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">I am eternally grateful to the global scleroderma
trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and
dedication to unlocking the scleroderma enigma, is nothing other than,
superhuman. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work
ethic. I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self
employed practising barrister. Further to having been told in 1997, by my
diagnosing doctor, that I was looking at a 15month prognosis. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">For latest updates follow: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Living the dream, scleroderma style. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical research at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit, The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
research purposes <b>only</b>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">No wages or admin costs. Thank You.</span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: June 2018 </span></div>
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</div>
Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-85406630378380363492018-06-26T00:49:00.001-07:002018-06-26T00:49:54.452-07:00Jan Petrie Procter, UK. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease. <div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtJGa3aZP6CGBzOXkGOkGSkGcBAl9gS0RpdacF8GURqrG0SNuMTfR6vUgq0SwBLk_h2PpDjXBExTEk0LNLZyUPorwVTy0_HpCM0rgcLnNxoqj5WWMx96G9P9ncRkNleBS_xio4K9apL0A/s640/2018+Jan+Petrie+Procter.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Jan
Petrie Procter, UK.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness Month 2018.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Raynaud's, Autoimmune Rare Disease.</span>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" data-original-height="1600" data-original-width="900" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD7D5vk_Lz3zS32qedN8CyIGYKUnlU6YIkMXwzNr83G6OeCtITsxr9OrR90mevwz9mponPOzdImH_4AnY6OsWRXFfYFL-PwKHWjaOCtdGApU6Yvolustt09hbVY3_RkqzOjyqBjMUH1Yk/s640/Screenshot_20170523-192210.png" width="360" /></span></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 102%;">Jan Petrie Procter, UK</span></span></span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Name:
Jan Petrie Procter </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Location:
Shrewsbury, Shropshire </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Diagnosis:
Diffuse Systemic Sclerosis, Raynaud's </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Year of
diagnosis: July 2014 </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Age at
diagnosis: 44 </span></div>
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<br /></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Where / who
diagnosed you? </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Royal Shrewsbury
Hospital </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What were your
presenting symptoms? </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Digital ulcers. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I was diagnosed with
CardioMyopathy (Heart Failure) in 2012. Until that time I was extremely healthy
and had had no major illnesses. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The cause of the
heart failure is still unknown although my doctors have suggested the most
likely cause is having contracted a virus at some point. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Managing my heart
failure took a couple of years but eventually we got the condition pretty much
under the best control possible and life continued, albeit I had to stop work
for a while due to my health. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Approximately one
year on, in 2013, my fingers were very painful, with increasingly severe
ulceration. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Tips of a couple of
fingers were black, others had digital pitting. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">A number of visits
and pleas for help to the GP and also the practice nurses came to
nothing. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In desperation, I
was doing my own research into the problems I was dealing with regarding my
fingers, such as extreme pain when I had hardly knocked them. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I was then rushed
into hospital in an unrelated incident, and happened to have a doctor see my
fingers, I was immediately admitted to hospital, where I stayed for five weeks
– yes five long weeks in the middle of the summer – not knowing what was wrong
– why I was there – with very sick people – and feeling sicker than ever,
myself!</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 reality:
</span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">From there on, I
have been diagnosed with Scleroderma and Raynaud’s. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I went into hospital
to receive a course of Iloprost Infusion – which entailed a one week stay, with
limited success. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The cold weather is
a nightmare for my fingers, and I am often seen wearing plasters on several, if
not all, of my fingers. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Nothing works for
this, and I have tried everything including heated gloves, hand warmers etc. If
my fingers are cold, they are cold, even if the rest of me is warm. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have been approved
to receive Illoprost treatments whenever my fingers are bad, or in the autumn
as a preventative measure. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have problems
receiving sufficient Illoprost though, as it makes my blood pressure drop so
low (55/45 at one point).</span></div>
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<br /></div>
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<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeJ_WjDk-eqj7q-SsjlJz5ozx2i9ULzV1V6Rr_t2j2zXBqQ_pwZhgZbT8EwTnq-dObm8xv4qYKkluCq2jzSFZ1y1mFa9ZU28Hu22LLc7_FzuCzNDeD_zMpzeNHzkfCEyDY7_vDeu5_-c4/s400/Screenshot_20170531-213624.png" width="225" /> </span></span></div>
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<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> <img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_qF1J1LrCY7t9ZsEPN-NdUBA7A_ksQ2yz4WVcbDdLglKXDynR6zKdR67flPrLQUr0X1tBpPJiVwX6U6H3p5Y_CRuNtTjzkeKqtkZqHfOHo_0hJsCeOqtFtZ45-m5OmsqUVcoj6ngheu4/s400/Screenshot_20170531-213636.png" width="225" /> </span></span></div>
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<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have telangiectasia
– red marks on my face, chest and a couple on my shoulders. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Currently I have a
tan which really helps to cover them and although I intensely dislike them,
there are worse things to have. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have exceedingly
dry eyes – waking up in the morning my eyes are unable to open until I have
used eye drops to lubricate them. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I also use a gel at
night before I sleep, but this has limited effectiveness. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My skin is very dry –
its kept manageable by using products like Aveeno. I moisturise my face at
least three times a day. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My hair is so thin
now, again, something I intensely dislike, but just put up
with. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Many dental problems
– my gums are receding, I’ve had five teeth out in the past two years. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have to rest during
the day – a little nap after work is absolutely essential if I am to do
anything in the evening (ie cook dinner or participate in family
life). </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have regular
appointments with my rheumatologist and cardiologist, just for check ups. We
have planned an Illoprost infusion for November. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Work have been
absolutely fantastic. I have a heater right next to me, and my poor boss must
despair at the temperature sometimes – most people who walk in to the office
comment on the temperature. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I work on a RAF base
in the military transport maintenance section. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The support which I
have received within my team, is probably the main reason I have been able to
continue working, flexibly around my symptoms. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My current biggest
challenges include: </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Managing to do normal
things with such painful fingers eg. typing, opening jars, washing hair etc. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I hate the way I look
when my skin is particularly tight, dry, sore and flaky. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Tiredness. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My wishes for the
future: </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Yes, sometimes I feel
desperately frightened for the future. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Googling symptoms,
life expectancy, outcomes, etc has previously sent me into a pit of depression,
but in general, I think I tend to manage my symptoms, probably not as well as I
should, as I think do have a tendency now, to bury my head in the sand to some
degree. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">But my philosophy is
– there are far worse things happening to far better people than me. I have
been lucky- it could be so much worse. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am so, so,
fortunate to have a wonderful support network of family and friends (despite
the fact that I pretty much never mention my illness and just hope that they
understand when I have to pull out of events etc). </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">So, it’s ever onwards
to the next adventure – who knows what’s around the next corner – for me, it’s
a diving trip to Egypt in four weeks – I will not give up. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Love to you,
especially Nicola who is a constant source of inspiration. I can’t wait to read
your stories too. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">June 2017. </span><br />
<br />
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</span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">2018 UPDATE: </span></b></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><img border="0" data-original-height="1110" data-original-width="1110" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2AgtCSxt86YeD3-g0kVbaZuCVq4YGPyUIAYNIbQxR0fN2-CGaqbZS7K99b39Q0cMdPw1HSzDCaaBjKyCt1VrEfymiXHo4C1YpvmmvdlpNL3SFSWvYz79aX2EBYhiPbUHucTyy3-JLssg/s400/Jan+car.jpg" width="400" /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">Current <b style="mso-bidi-font-weight: normal;">SYMPTOMS:</b> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I'm actually really
pretty well! Having suffered badly in the past with digital ulcers, I've not
actually had one for over twelve months now. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5X6uVSfsJj0cMOD3fo0vgm_VfKIO69za4G4mINJATz3eB4QQhyXNBfWYruUdoKTbrfs-60N9XmVAHNErnAPiDvAwa7MN3MmB6Ujnc3j626b8_ZQOBvf6QUC6kJUW3Zh8QD6Z-9Pu25pc/s1600/Jan+ulcer.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5X6uVSfsJj0cMOD3fo0vgm_VfKIO69za4G4mINJATz3eB4QQhyXNBfWYruUdoKTbrfs-60N9XmVAHNErnAPiDvAwa7MN3MmB6Ujnc3j626b8_ZQOBvf6QUC6kJUW3Zh8QD6Z-9Pu25pc/s320/Jan+ulcer.png" width="180" /></a></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
</span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFpIPXaO4sOY1DfUNMcvxtEu3RIL5q62xOBriuaoBdGw5tZ1JgjLrvG8rqUoXt8fLv03yZegKB5lpqjtrS7tSaHDmlZr7XNrX1Dbbc5ED9H0UJr1Y_ShTu9uIpdbmZYRWD3oRrHDdRNDo/s400/Jan+fingers.png" width="225" /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;"></span></span></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I do have strange
growths on my finger tips which I assume is related but have not been affected
sufficiently enough to worry.<span style="mso-spacerun: yes;"> </span></span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">The telangiectasia on
my face and neck iare still there, possibly increasing slightly but it doesn't
affect me too much. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqvGwhki2nnP6dS6wE32ZMLZbUFSw-tXDbSscUwwOIE1xnb8UM8tT-ou3JxcmmEWZaG1jJmiRld6XLBDu-gbIjeyBrVrmU13dvMgjMIPjBeXfFGsALF78vc9iMV3rpmNNbe8hQcIAJPq4/s400/Jan+Telangiectasia.jpg" width="223" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I do still become very
tired, if only my body was as active as my mind, my house would be so tidy and
organised but the two are just not in sync so I have to be satisfied with what
I can do. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I don't walk far as my
legs, hips and back get very achy. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">On waking, my body is
extremely stiff, especially my arms and shoulders, but this tends to ease, over
about an hour. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Current <b style="mso-bidi-font-weight: normal;">MEDICATION:</b></span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">As I am also diagnosed
with Cardio Myopathy, there are the usual problems with what medications help
one problem, exacerbate the other. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">So, currently, I'm
taking Adlat Retard, Spironolactone, Fuerosimide, Atorvastatin, Omeprazole. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">In addition, I take
iron and multivitamin tablets. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;"><br />
<span class="5yl5">I've had some strange problems over the year, and I must admit
I do tend to blame Scleroderma for everything! </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Having been extensively
tested for allergies following severe sudden rashes, I now know I'm allergic to
a number of additives in products like washing powder, shampoo, face creams and
cosmetics. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Eliminating all these
projects from my life as far as humanly possible has cured the problem. Big
tick, against this one. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">So, my current
situation, is actually very, very good and I do consider myself so fortunate
compared to many of my fellow scleroderma patients. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I don't know that I'm
doing anything different from this time last year but I'm definitely in a much
better place medically.</span></span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">RESEARCH 2018: </span></b></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">I have not taken part in any
research trials. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I would ABSOLUTELY be
willing to participate in trials, but have never got past the initial
screening, possibly due to the heart failure complications? </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I am willing to try all,
and any possible, medical interventions but no one wants me, lol!</span></span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">IN BETWEEN MEDICAL APPOINTMENTS: </span></b></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">What do I do to keep
myself busy? </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Well, I work part time,
mornings, in a job I love. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">And as Nicola knows, I
love spending time with friends and family on holiday, the warm weather is so
good for me. Although, I do struggle with my heart failure if it's too hot.</span></span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;"><br />
<br />
<span class="5yl5">I love snorkelling in the Red Sea. I have given up diving now,
but I still love it, in amongst the corals and dolphins. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1599" data-original-width="896" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMmB3I8zboK7RCkIx-qYdPJVVnQoG5yGOZxbojgoqALXHBXVquhxuqTovNdXLHFSbtRH9fjQFVX57nSARyb-XQJeDOCxyo13ag4wdfDlUL42TCFm1itg1G1ydJ0G8FT6sJ4c6CVeJYso4/s400/Jan+Palm+tree.jpg" width="223" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;"><span class="5yl5"> </span> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I am very involved in
my local village activities, we have a great community here, so I consider
myself very fortunate indeed. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I love crafting, one of
my very many and varied skills is making tiaras.</span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidjR7-9d5NtlieWMWRRc0OmvlV82ES61GbvSS-9VJDqRzBQWTnmIbzqdpBoRHb2I5ycriSH9P6m3ZHSch8oNaCn8yXDsohxxBy129nPXjuxvA2waYCZBjmlubrWXFH_HOVTQ_dL5UK0Dw/s400/Jan+tiara.jpg" width="400" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I guess my closing
statement would be that, for no apparent reason, both my scleroderma and my
heart failure are now very much in the background.</span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">I lead an almost normal
life, so, sudden and dramatic improvement, really is possible.</span></span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;"><br />
<br />
<span class="5yl5">Thank goodness for absolute angels like Nicola, she's been my
go to every time for information, I'm sure you all are familiar with the phrase
'scleroderma? What's that?' And this is from medical professionals. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt;"><br />
<span class="5yl5">I wish you all much love.</span> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Jan</span></span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"> <span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Huge thanks go to Jan
for sharing her scleroderma reality and experience for Scleroderma Awareness Month. </span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqiT9hqg-SohM57MI2hcpnd1iWQNbsxprGy-vGKLH60Pra-10je-mDArmjvF6ZKKm1l3Wu3ePJI_IXTzOcdRyCxxApyTPRX4T5UnUjLOARyUklLNA9G0VL8i-dGfDX1EZXm1xKsIthQk4/s640/2018+Symptoms+feels+like.jpg" width="640" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="423" data-original-width="719" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcQXW33MEZwnFXdQ-H1IuBa5sfyon1WzA3vWe5asSF-oEyxJuQxUS4DfxC-XqChJCg3O24QwVX2Cwx9rASOOuf57mBoYoPfWUISEl4gwG9PEDPcFHxVIwTyJqWI9ZL7ZlZ5Sq-YtT2XFc/s400/Living+the+dream+scleroderma+style.jpg" width="400" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">Current <b>Unmet Clinical Needs</b> 2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">CALCINOSIS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">GUM RECESSION, TOOTH
EXTRACTS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">SOFT TISSUE, ULCERS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">TELANGIECTASIA,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">SCLERODACTYL HANDS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">INVISIBLE
DISABILITY, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/invisible-disability-unmet-clinical.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">RAYNAUD'S, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">GASTROINTESTINAL,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg5j4VsZEdHoMXAIOPfothODMqC0K08-wjRvvapARWlECOrMIrtdO8m9uv9dXKnpLqBfv_vFY3gcSE8igg_3FfQ8wf7U2gtlrz_n74LreCdX9y1sd-xqAJRvZJ9Pz6mbvWwTZh1Xo7vvw/s400/Kevin+East+fundraiser+18.8.17.jpg" width="400" /></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="1475" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQdiFk9DYiU4bSQYfr5zWOGv8U_HkeROAnY1-LDKN7VGKEZFEncEjt7DJ28rpi_PScWHd0wRzLSsWwPI0_U4LtaC-g2nroF6Fv_CQOeloZyuqjy6vt_yIevsumQAGm6yVu1XdA4W6dNsM/s320/Kev+East+family+and+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="294" /></td></tr>
<tr align="center"><td class="tr-caption"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof
Chris Denton presenting a plaque to Kevin's daughter, Michelle, and
wife, Debby, for funds raised in Kevin's memory for medical research at
the Unit. Thanks to Michelle for the photo.</span></td></tr>
</tbody></table>
<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/scleroderma-awareness-month-june-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Global Patient
Profiles Campaign Index, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/index-scleroderma-raynauds-awareness.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of Medical
Research and Awareness Raising, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-3-medical-research-areas-of.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-2-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-1-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/why-research-and-patient-profiles.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Global Patient
Profiles Campaign Introduction, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'Being your own
awareness advocate', Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/living-dream-being-your-own-raynauds.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness
Month Flashback 2017, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/flashback-scleroderma-awareness.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness
Month Flashback 2016, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/june-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My 2016 Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-2016.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Campaign Video, Click
<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/scleroderma-awareness-month-2016-atoz.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">March 2018 Autoimmune
Disease Awareness Month, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/03/scleroderma-march-autoimmune-disease.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTQGRzLv338JJn-8BkTe54QYunNCosvY0nZIbhoU1YZAeqKnqay4JfiouHRTiBcmycO7WCGHncJSfxNYtq684JGWrlMMHSDl0qgwopyH4dy-iQZq3ZTw_E9UA5eSZx6owUMYGYTkOKHH0/s640/WSD+2018+April.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
<br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver MEP for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><br /></span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view my article 'Why Global Collaboration is Important', Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/03/why-global-collaboration-is-so.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>All</b> patients included within the global patient profiles campaign, highlight the <b><span style="color: red;">URGENT</span></b> need for an <b>investment in medical research</b>, as well as: </span><br />
<br />
</span><br />
<div style="text-align: center;">
<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Early Diagnosis </span></b></span></div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres </span></b></span></div>
<div style="text-align: center;">
<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></b></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>Access to innovative medicines</b></span> </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>ALL </b>being, crucial factors for best practice management and care. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles:</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk8dbYkGayrolSMluKay-AcC3Bc-LIg_kyaNmSkJoV9ylu9by-lR-Yv-3WamHbK7rf-RsZBv_L0EH9djkbBQ9ZYDa_B09x4-N8BlGOGgv2qMAFJQSXkl1TjKm6jTuodSRsmlPt0dttl6g/s400/2016+Day+30.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKw7g5PkwKow5qJreG8K5ZEzXmXD1vKcBXYbjBA3j-LY7m9Nw_nQaQv5QIXugRaIfyik7KaxRYkUSKBQ1Ci8Z1UMA655BUdoIt0jHRoiSPl3pYFx4q2cWXFFEwJiivsxp5VRNdHJSZ_SA/s640/RURF+thermo+awareness+2017.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">I am eternally grateful to the global scleroderma
trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and
dedication to unlocking the scleroderma enigma, is nothing other than,
superhuman. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work
ethic. I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self
employed practising barrister. Further to having been told in 1997, by my
diagnosing doctor, that I was looking at a 15month prognosis. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">For latest updates follow: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="color: blue;">Raynauds Scleroderma Awareness Global Patients</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Twitter: @SclerodermaRF @RaynaudsRf </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Google Plus: <a href="https://plus.google.com/communities/115644437712711107914" target="_blank"><span style="color: blue;"><span style="mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">RaynaudsSclerodermaAwarenessGlobalPatients</span></span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld
#RaynaudsFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Living the dream, scleroderma style. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical research at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit, The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
research purposes <b>only</b>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">No wages or admin costs. Thank You.</span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#HOPE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: June 2018</span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-48001259938516956732018-06-25T00:24:00.001-07:002018-06-25T00:24:19.706-07:00Patti Pascucci, USA. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.<div style="text-align: center;">
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Patti
Pascucci, USA.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness Month 2018.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Raynaud's, Autoimmune Rare Disease.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Name:<span style="mso-tab-count: 2;"> </span><span class="5yl5">Patti Pascucci </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Location:<span style="mso-tab-count: 1;"> </span><span class="5yl5">Nashua NH USA </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Diagnosis:<span style="mso-tab-count: 1;"> </span><span class="5yl5">Scleroderma Fibromyalgia </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Year of diagnosis:<span style="mso-tab-count: 1;"> </span>1984 </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Age at diagnosis:<span style="mso-tab-count: 1;"> </span>25 </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Where / who diagnosed you? What were your
presenting symptoms?</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I diagnosed myself because the doctors here had
not seen a case. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had my degree in clinical laboratory sciences
and worked as an ASCP certified Medical Technologist.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">During the time, I researched the disease back
in my Clinical Immunology class.<br />
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I wanted to know more because my <span class="5yl5">maternal grandmother had died
from of it, age 46 - a year before I was born. </span></span></div>
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<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">She was in a Boston MA
hospital where, they at least, diagnosed her.<span style="mso-spacerun: yes;"> </span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Of course, there were
no treatments available in 1957. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I gave birth to my
first child in June 1984. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Within 6 weeks I was
experiencing tight itchy skin... hives with swelling... especially in my
fingers. </span></span></div>
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<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had realized - early
symptoms actually began, around 19 years old, with swelling fingers and
Raynaud’s - the turning blue and red. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I saw the Doctor, but
he thought I had some sort of punching blood vessel in my upper arms - maybe a
Binet protrusion blocking blood flow. No real answer. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had more of the hives
and swelling, and body pain that I could not explain even though I was very
physically active with biking, running, working out. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As the symptoms
worsened after my daughter was born, <b style="mso-bidi-font-weight: normal;">I
told my doctor</b> what it was. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">He ran tests - One
barium swallow findings, slight abnormality in the distal portion. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My blood tests were not
definitive for anything. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Again.. no answers and
no help... just told me, that if it was scleroderma, I would not live long. So
I went home and had my ups and downs as the fingers got worse with swelling and
tightening all over. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I went 10 months before
a rheumatologist at the Lahey Clinic in Burlington MA took one look at me and
told me, yes I have it. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">He said I was
right. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Then he told my husband
and I to go home, and live my life as best as I could. No treatments, no
cure... he read off a long list of what to expect along with early death... and
said goodbye. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Well my husband was
shocked and within 2 years of making my life even harder with his callous and
distant ways... he wanted out... said I was consumed by this disease. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">At this point I had 2
children ages 3 and 1. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br />
<span class="5yl5">I had experienced worsening symptoms just a few months earlier
with my skin swelling so tight and my elbows breaking open to the bones. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My arms were
experiencing awful contractures so mobility became hard. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I also experienced what
I learned was a bit of an emotional breakdown from depression but my husband
had discouraged me... forbid me from seeking any psychotherapy earlier on, when
I felt I needed it. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had no one to talk to
about it all and my family lived 75 miles away. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I couldn't show my
weakness especially to my Mom as she would probably get too scared for me after
watching her own mother die from it.</span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My husband was actually
looking for me to die... or getting so bad he could divorce me and take the
kids... and he worked it so that he made my life even more miserable with his
cheating. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">He was a very
controlling and manipulative man who worked out a plan to get out of the
marriage but make me so miserable that I would file for divorce. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I did, and spent
several years fighting for custody which the children did live with me. It was
so very hard doing it on my own. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And then I lost my job
as my fingers could no longer perform the laboratory tests. I then found a part
time job in advertising sales where I could make my own hours and work from
home if needed. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I spent many years with
having endured many bad open finger wounds, debreedments, participating in
studies at Boston Medical.. with no available treatments! </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Many surgeries
including sympathectomies, and skin grafts. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">But I raised my kids...
worked out every chance I could, in the gym and lots of long walking...</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 reality:<span style="mso-spacerun: yes;">
</span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Today I no longer go to
the gym as my hands are too curled. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My fingers have
shortened too, losing bone to resorption. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I suffer from terrible
GERD with gastropareseis. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I also have terrible
bowel issues...constipation... slow to no movement. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have some lung
scarring but I have increased my breathing capacity with all the walking and
yoga! </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have scarring and
unevenness of my corneas which can only be helped by wearing 2 sets of contact
lenses but I can no longer get them in my right eye as the eyelids are too
tight. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My vision is okay most
days with just relying on the one eye but without the lenses, I am legally
blind. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I live alone and my
kids - grown with their own lives, do not help me. I believe it's because they
always saw me as a capable and athletic mom. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I do take pain meds. The
pain would be horrible without it. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I always have at least
5 bandaged fingers at anytime. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Nerve jolts are
intense. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">So, I take my meds and
just DO! </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I just know if I
stopped moving and doing, I would cripple up with more
contractures. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What are your <b style="mso-bidi-font-weight: normal;">3 top tips</b> for living with your diagnosis?<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Healthy... healthy
eating and living, though I Love My Gummie Candies. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I do yoga which has so
helped me with range of motion... especially Yin yoga which helps stretch the
tendons and ligaments with poses focused on using time and gravity. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And since I have my
son's Australian Shepherd - she keeps me walking which is so good</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">.<span class="5yl5"> And
I have my little adopted Chocolate Sealpoint mix kitty.. DaisyLou Who. I </span>LOVE
<span class="5yl5">my furbabies. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am a 'Nonna' to two
beautiful girls ages 3 and 1 and another grandbaby is due in
September. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly Blessed</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span class="5yl5">and
have a strong Faith in God. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I do not pray for my
own cure... I've done this for 33 years now and I'm okay but I do pray for the
too many others suffering with this horrible disease. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br />
<br />
<span class="5yl5">And, I have met several people here with Scleroderma... in
Hollis and Nashua... that's within a 7 mile radius! Unbelievable considering
the rarity. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And we met by chance...
not looking for them. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Weird. Anyway, That's
me in a nutshell - I take my supplements and try to eat healthy. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Positive attitude helps
too! </span></span><br />
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">June 2017. </span></span><br />
<br />
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><!--[if gte mso 9]><xml>
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="line number"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="endnote reference"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="endnote text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="table of authorities"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="10" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="1" SemiHidden="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="11" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="22" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Preformatted"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="39" Name="Table Grid"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" QFormat="true"
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<w:LsdException Locked="false" Priority="29" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" QFormat="true"
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<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 1"/>
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<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 1"/>
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<w:LsdException Locked="false" Priority="61" Name="Light List Accent 2"/>
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<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 2"/>
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<w:LsdException Locked="false" Priority="61" Name="Light List Accent 3"/>
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<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 3"/>
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<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 5"/>
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<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 5"/>
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<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 5"/>
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<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 6"/>
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<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" QFormat="true"
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<w:LsdException Locked="false" Priority="21" QFormat="true"
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<w:LsdException Locked="false" Priority="31" QFormat="true"
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<w:LsdException Locked="false" Priority="32" QFormat="true"
Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
UnhideWhenUsed="true" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="TOC Heading"/>
<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
<w:LsdException Locked="false" Priority="46" Name="Grid Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="Grid Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="Grid Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 4"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 5"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 5"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 5"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 5"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 5"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 6"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 6"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 6"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 6"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 6"/>
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<br />
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span class="3oh-"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 UPDATE:</span></b></span><span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></span></span></span></div>
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span></span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></div>
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span></span>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Nothing
much has changed with my ongoing symptoms. </span></span></span></span></div>
<span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It’s
now been 34 years of living with this. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">New
stuff keeps popping up, including GI issues and corneal scarring that leaves me
with very few options for correcting. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I’ve
always been terribly near sighted but this corneal problem requires wearing 2
contact lenses in each eye but I can no longer get them in my right eye. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The
tightness of my eyelids won’t allow it. On a good day I see pretty well but
without the lenses in my left eye, I am legally blind! </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
wonder if others are having this same problem? </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
only take Omeprazole for very bad acid reflux, pain meds and gabapentin for the
crazy nerve jolts and searing hot, throbbing, stabbing pain of ulceration some fingers,
and an ankle that won’t heal. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Antibiotics
are not working. I’m allergic to most of them. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">RESEARCH 2018: </span></b></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
am not enrolled in any studies but you would think Boston MA, Boston University
Hospital would have more to offer. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It’s
been that way a long time for me. I did participate in a couple of trial meds
but neither produced the desired results... That was about 20 years ago!</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">So
I deal with this monster by myself with a great caring primary care Dr and a
good rheumatologist. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">IN BETWEEN MEDICAL APPOINTMENTS:</span></b></span><span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
continue to walk my dog, Chubbies. She’s an Aussie! Lots of energy! </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_y3zSBtuAqUIWiOPAnvpZJF-p6Tz5MzTF3w2a7I2th9UNglJMD2M-zNoJlN0RaXuQ9Pi3YVFe280d9zyX8DggCIeiWxw_hstalNkpRVhMAnkuWt6eVGWb3U4nPABTOLk-2geHR0aBwhc/s320/Patti+Chubbies.jpg" width="240" /></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And
I do yoga! </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Thank
goodness for my yoga classes and friendships as this disease keeps me a bit
isolated. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
take it day to day... I have my Aussie and my cat... 3 grandbabies now. Something
I never thought I would live to see.</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I’m
still quite active for 59! </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Keeping
the body moving is key, along with mind and spirit. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I’m
truly Blessed. </span> </span></div>
</span></span><span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></span><span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></span></div>
</span></span><span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></span></div>
</span></span><span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This
is an antique chair which I refinished in light grey mineral paint sealed with
a beeswax/hemp oil. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
</span></span><span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhrJALjmqII5N8Za2_4Pu5sdUwEdSLbXMBaq6US9aFt8CmvAlc-DUtwjhAFEKmsEInX8siyn-RCSom-M6vsmDnVi3giiwQeWyl69ELTGEVPQH7_xANjWna7Jaz_ZRNtZ6amMz2x9LNEes/s1600/Patti+chair.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhrJALjmqII5N8Za2_4Pu5sdUwEdSLbXMBaq6US9aFt8CmvAlc-DUtwjhAFEKmsEInX8siyn-RCSom-M6vsmDnVi3giiwQeWyl69ELTGEVPQH7_xANjWna7Jaz_ZRNtZ6amMz2x9LNEes/s320/Patti+chair.jpg" width="240" /></a></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
</span></span><span class="5yl5"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Repaired
the rush seating too. I gave it to my baby grandson for Christmas.</span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivNyTzorT1xIsPu0O9E8o-Tu1Ybxup8m6MFVEeN9mGyASpa5u_8IeRh_RNY4SHD449WKGT7w6BT5jNJB2vnmZw0nSMCM3kST21SVBV0iTTlwKsvPiSToaZPmOv4y3YNbLFZQaHM72d1S4/s320/Patti+knitted+blanket.jpg" width="240" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I knitted
this blanket for my daughter and her hubby for Christmas. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
made smaller ones previously in pink and purple for my granddaughters. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrKK0g49Zy1Q1fMhk-zAuPWUoZBnRXzxrHIJ-Z5avRPwT4M6f8RM_dtECdMDef81ddMKyUi3cvLHyf0UBSY9pG_93566_dYarjXlsAzHDQUHatIALeXP1bH8XvCqyLaaDUQvKcDde8hKg/s320/Patti+orange+blanket.jpg" width="240" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCNJ4MIDQDEWOZ3-j1KF2Zk2m5aCbBH7jtTAxVEz8LZyOxb5KGYRV6uC8LhKrxS9-QAoUNvOW7We5tH4dJ5HhXth4PCDwRa5Hxkf3piccA8z5Nh_wwcQeP1rxkS0AnFqBjX_txseae8lw/s320/Patti+purple+blanket.jpg" width="240" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Various
pics of what I do: </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijkT0Q3DYnAH30T_ElkD4MRTDAPvdxs0yd31iu5pnGnaeR7UcQWh1HaI9aAPRxEMwiSSYl1Q32s3t5OMuAV7nSNBPwOv_1w5wt8NoKGJJjyfE-VFsM92RRNmi4qv3i4LAhCo1yco9uKB4/s320/Patti+giraffe.jpg" width="240" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXwMaedMkRK-bbLbSfp09hzo3ROFRQNDvnl_WrZxZNxKfmUwTD2s16_uhBlEjsudj0jCQ6g_0W0PUOECazZOkBYMcQQzq4iWHjiB-JtAZd2tGzEzICYEDrmp8C7dM97OjuVELHPZFSuuk/s320/Patti+painting.jpg" width="240" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1600" data-original-width="1215" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioe0fq_2wlzwpCihTymduPLDt8RTyPzv8qDlzZ6PEekUhUgd22_sqZR52Yq5TzYU12kpVSCjHUus107_WxTg1kh0GwrHGZIAbf-obYQX0eBETfRRXzekDEXkcLZQ8LCNorBflZLOtVOF4/s320/Patti+sheep.jpg" width="242" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
also garden... mostly containers but I’ve planted beautiful ground covers,
textured greens with colorful perennials in front of my town home. As well as,
in front of the neighbors on each side of me... so nothing stops me ... I won’t
let that happen! </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
</span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<a href="https://www.blogger.com/null" name="_Hlk484421106"></a><span style="mso-bookmark: _Hlk484421106;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Huge thanks go to Patti
for sharing her scleroderma reality and experience in such detail, for Scleroderma Awareness Month.<span style="mso-spacerun: yes;"> </span></span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<span style="mso-bookmark: _Hlk486255991;"></span>
<br />
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I am sure that you will agree with me, Patti shows us all how to live with this
diagnosis – <b style="mso-bidi-font-weight: normal;">34 years! WOW…. </b>Living
the dream, indeed. </span></span><br />
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<img border="0" data-original-height="720" data-original-width="1040" height="442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqiT9hqg-SohM57MI2hcpnd1iWQNbsxprGy-vGKLH60Pra-10je-mDArmjvF6ZKKm1l3Wu3ePJI_IXTzOcdRyCxxApyTPRX4T5UnUjLOARyUklLNA9G0VL8i-dGfDX1EZXm1xKsIthQk4/s640/2018+Symptoms+feels+like.jpg" width="640" /></div>
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<img border="0" data-original-height="423" data-original-width="719" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcQXW33MEZwnFXdQ-H1IuBa5sfyon1WzA3vWe5asSF-oEyxJuQxUS4DfxC-XqChJCg3O24QwVX2Cwx9rASOOuf57mBoYoPfWUISEl4gwG9PEDPcFHxVIwTyJqWI9ZL7ZlZ5Sq-YtT2XFc/s400/Living+the+dream+scleroderma+style.jpg" width="400" /></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"> </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">Current <b>Unmet Clinical Needs</b> 2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">CALCINOSIS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">GUM RECESSION, TOOTH
EXTRACTS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">SOFT TISSUE, ULCERS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">TELANGIECTASIA,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">SCLERODACTYL HANDS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">INVISIBLE
DISABILITY, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/invisible-disability-unmet-clinical.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">RAYNAUD'S, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">GASTROINTESTINAL,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg5j4VsZEdHoMXAIOPfothODMqC0K08-wjRvvapARWlECOrMIrtdO8m9uv9dXKnpLqBfv_vFY3gcSE8igg_3FfQ8wf7U2gtlrz_n74LreCdX9y1sd-xqAJRvZJ9Pz6mbvWwTZh1Xo7vvw/s400/Kevin+East+fundraiser+18.8.17.jpg" width="400" /></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="1475" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQdiFk9DYiU4bSQYfr5zWOGv8U_HkeROAnY1-LDKN7VGKEZFEncEjt7DJ28rpi_PScWHd0wRzLSsWwPI0_U4LtaC-g2nroF6Fv_CQOeloZyuqjy6vt_yIevsumQAGm6yVu1XdA4W6dNsM/s320/Kev+East+family+and+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="294" /></td></tr>
<tr align="center"><td class="tr-caption"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof
Chris Denton presenting a plaque to Kevin's daughter, Michelle, and
wife, Debby, for funds raised in Kevin's memory for medical research at
the Unit. Thanks to Michelle for the photo.</span></td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/scleroderma-awareness-month-june-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Global Patient
Profiles Campaign Index, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/index-scleroderma-raynauds-awareness.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of Medical
Research and Awareness Raising, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-3-medical-research-areas-of.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-2-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-1-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/why-research-and-patient-profiles.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Global Patient
Profiles Campaign Introduction, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'Being your own
awareness advocate', Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/living-dream-being-your-own-raynauds.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness
Month Flashback 2017, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/flashback-scleroderma-awareness.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness
Month Flashback 2016, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/june-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My 2016 Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-2016.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Campaign Video, Click
<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/scleroderma-awareness-month-2016-atoz.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">March 2018 Autoimmune
Disease Awareness Month, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/03/scleroderma-march-autoimmune-disease.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTQGRzLv338JJn-8BkTe54QYunNCosvY0nZIbhoU1YZAeqKnqay4JfiouHRTiBcmycO7WCGHncJSfxNYtq684JGWrlMMHSDl0qgwopyH4dy-iQZq3ZTw_E9UA5eSZx6owUMYGYTkOKHH0/s640/WSD+2018+April.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
</tbody></table>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
<br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver MEP for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><br /></span>
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view my article 'Why Global Collaboration is Important', Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/03/why-global-collaboration-is-so.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>All</b> patients included within the global patient profiles campaign, highlight the <b><span style="color: red;">URGENT</span></b> need for an <b>investment in medical research</b>, as well as: </span><br />
<br />
</span><br />
<div style="text-align: center;">
<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Early Diagnosis </span></b></span></div>
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<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres </span></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>Access to innovative medicines</b></span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>ALL </b>being, crucial factors for best practice management and care. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles:</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">I am eternally grateful to the global scleroderma
trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and
dedication to unlocking the scleroderma enigma, is nothing other than,
superhuman. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work
ethic. I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self
employed practising barrister. Further to having been told in 1997, by my
diagnosing doctor, that I was looking at a 15month prognosis. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">For latest updates follow: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Facebook Page: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="color: blue;">Raynauds Scleroderma Awareness Global Patients</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Twitter: @SclerodermaRF @RaynaudsRf </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Google Plus: <a href="https://plus.google.com/communities/115644437712711107914" target="_blank"><span style="color: blue;"><span style="mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">RaynaudsSclerodermaAwarenessGlobalPatients</span></span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld
#RaynaudsFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Living the dream, scleroderma style. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical research at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit, The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: June 2018</span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0tag:blogger.com,1999:blog-1635866514731290816.post-78229685394200990362018-06-24T00:54:00.000-07:002018-06-24T00:54:44.153-07:00Sarah Jatto, UK. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm5q2Q5d8RO6OmshTr7N9tO___V7i83p0YdKEu5uMdrfY60-ub5CSqB-ogbHj8q7gfP5br9LzQvwY8hs0XHocGdVw_3NOKiwXRqCvP7YjXo_U7ZYysi1Rnm5uz2etqAD4Yu0SF6AdpS9c/s640/2018+Sarah+Jatto.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sarah
Jatto, UK.</span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness Month 2018.</span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"> </span></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Raynaud's, Autoimmune Rare Disease.</span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="800" data-original-width="450" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLvSpuHUWSWrXl8NfYO9zP2GxfrLESiSiP6IqMahyDef7JEGsq2IdNOxLVfCihWuXL7kkZbdHSyb5LK3iIHJXoyKjZfJ2TMIN-dzNbmzSOObTRDxrMGV2nN_AbEYRJy-eZODXJWZ0bazY/s640/19478071_1837515973243153_446188946_n.jpg" style="margin-left: auto; margin-right: auto;" width="360" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 102%;">Sarah
Jatto, UK</span></td></tr>
</tbody></table>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Name:<span style="mso-tab-count: 2;"> </span>Sarah
Jatto </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Location:<span style="mso-tab-count: 1;"> </span>London </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Diagnosis:<span style="mso-tab-count: 1;"> </span>Systemic
Scleroderma </span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Year of diagnosis:<span style="mso-tab-count: 1;"> </span>2009 </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Age at diagnosis:<span style="mso-tab-count: 1;"> </span>19 </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Where / who diagnosed you?<span style="mso-spacerun: yes;"> </span></span></div>
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<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rheumatologist at
Chelsea & Westminster Hospital </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What were your presenting symptoms? </span></div>
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<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Swollen fingers.</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Swollen face.</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Hypo depigmentation to
my skin. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Tightness of face,
mouth, torso and arms. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's.</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">How long did it take for you to be diagnosed
after first symptoms? </span></div>
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<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It took 2-3 years to be
completely diagnosed. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">When patches appeared
on my face my doctor treated it as a “virus” from the sun and gave me Canesten.
</span></span></div>
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<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">When I realised the
“virus” patch was not healing I revisited my GP. Upon arriving, she noticed my
swollen face and hands, sent me for a blood test and later a vascular
surgeon.<span style="mso-spacerun: yes;"> </span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 reality<span style="mso-spacerun: yes;">
</span></span></div>
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<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">9 years of having
Scleroderma and I feel it has stabilised. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Current SYMPTOMS:</span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I still suffer with
Raynaud’s and, severely. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have contracted
fingers, hypo depigmentation and scarred lungs. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<br /></div>
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<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I currently take
Methotrexate, prednisolone, folic acid, omeprazole and fluoxetine. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What are your <b style="mso-bidi-font-weight: normal;">3 biggest current challenges</b> due to your diagnosis?<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Getting dressed. </span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Acid reflux.<span style="mso-spacerun: yes;">
</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud’s.</span></div>
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<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What are your <b style="mso-bidi-font-weight: normal;">3 top tips</b> for living with your diagnosis?<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Take one day at a time.
</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Keep stress levels down.
</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Rest often.</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">What are your <b style="mso-bidi-font-weight: normal;">3 wishes</b> for the future?<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Find the cause of
Scleroderma. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Find a cure. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For patients to live
happily ever after Scleroderma. </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma is very
unpredictable, it takes a lot of listening to your body, understanding it,
knowing your boundaries and not surpassing them. </span></span><br />
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">June 2017. </span></span><br />
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span><br />
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="35" SemiHidden="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="1" SemiHidden="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="22" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" QFormat="true" Name="Emphasis"/>
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1"/>
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<w:LsdException Locked="false" Priority="65" Name="Medium List 1"/>
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<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1"/>
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<w:LsdException Locked="false" Priority="73" Name="Colorful Grid"/>
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<w:LsdException Locked="false" SemiHidden="true" Name="Revision"/>
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<w:LsdException Locked="false" Priority="30" QFormat="true"
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<w:LsdException Locked="false" Priority="61" Name="Light List Accent 3"/>
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<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 6"/>
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<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 6"/>
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<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 6"/>
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<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" QFormat="true"
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<w:LsdException Locked="false" Priority="21" QFormat="true"
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<w:LsdException Locked="false" Priority="31" QFormat="true"
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<w:LsdException Locked="false" Priority="32" QFormat="true"
Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
UnhideWhenUsed="true" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="TOC Heading"/>
<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
<w:LsdException Locked="false" Priority="46" Name="Grid Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="Grid Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="Grid Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 1"/>
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</span></span></span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2018 UPDATE:</span></b></span></span></span></div>
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;">
</span></span></span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><br /></span></span></span></div>
<span class="3oh-"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;">
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Current <b>SYMPTOMS:</b> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Raynaud's, stiffness, rheumatoid arthritis.</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Current <b style="mso-bidi-font-weight: normal;">MEDICATIONS: </b></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Methotrexate, Prednisolone, Fluoxetine, Folic Acid and Omeprazole. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">RESEARCH 2018: </span></b></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Have you taken part in a research trial?</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">No </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>IN BETWEEN MEDICAL APPOINTMENTS:</b> </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am kept bust with my Me and Sclero Awareness raising. </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
</span></span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Huge thanks go to Sarah for sharing her
scleroderma reality and experience in such detail, for scleroderma awareness
month.<span style="mso-spacerun: yes;"> </span></span><br />
<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;">And, HUGE Thanks to Sarah for her amazing awareness efforts and her generosity to the Just Giving Page for the Scleroderma Unit, where 100% of the monies will be used for medical research purposes only. </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1184" data-original-width="666" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdrhJOcnYGMWiSH9Lsbay9i2jN82bzYzNa8Idq932UpGd14dhT9GI15N-703ylGGNmThbsZPN5Qp_LA1yGVQCuP3otM2Y50TBXjmHiloxCIdMM7x4X8EaVxV3pTuHWdgMhIgft_KxMfYM/s400/Me+and+Sclero+goody+bag+1.jpg" width="225" /></div>
<div class="MsoNoSpacing" style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To follow Sarah’s ‘Me&Sclero’ Facebook
Page, Click <a href="https://www.facebook.com/MeandSclero/?hc_ref=SEARCH&fref=nf" target="_blank"><span style="color: blue;">here</span></a><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">You can also follow 'Me&Sclero' on Twitter
and Instagram. </span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1040" height="442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqiT9hqg-SohM57MI2hcpnd1iWQNbsxprGy-vGKLH60Pra-10je-mDArmjvF6ZKKm1l3Wu3ePJI_IXTzOcdRyCxxApyTPRX4T5UnUjLOARyUklLNA9G0VL8i-dGfDX1EZXm1xKsIthQk4/s640/2018+Symptoms+feels+like.jpg" width="640" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="423" data-original-width="719" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcQXW33MEZwnFXdQ-H1IuBa5sfyon1WzA3vWe5asSF-oEyxJuQxUS4DfxC-XqChJCg3O24QwVX2Cwx9rASOOuf57mBoYoPfWUISEl4gwG9PEDPcFHxVIwTyJqWI9ZL7ZlZ5Sq-YtT2XFc/s400/Living+the+dream+scleroderma+style.jpg" width="400" /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles: </span> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">Current <b>Unmet Clinical Needs</b> 2018, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/06/scleroderma-awareness-month-2018-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt; mso-fareast-language: EN-GB;">CALCINOSIS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/calcinosis-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;"></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">GUM RECESSION, TOOTH
EXTRACTS, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gum-recession-tooth-extraction-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">SOFT TISSUE, ULCERS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/soft-tissue-digital-ulcers-unmet.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">TELANGIECTASIA,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/telangiectasia-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">SCLERODACTYL HANDS,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/sclerodactyl-hands-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">INVISIBLE
DISABILITY, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/invisible-disability-unmet-clinical.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">RAYNAUD'S, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/raynauds-phenomenon-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-language: EN-GB;">GASTROINTESTINAL,
Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/gastrointestinal-unmet-clinical-need.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg5j4VsZEdHoMXAIOPfothODMqC0K08-wjRvvapARWlECOrMIrtdO8m9uv9dXKnpLqBfv_vFY3gcSE8igg_3FfQ8wf7U2gtlrz_n74LreCdX9y1sd-xqAJRvZJ9Pz6mbvWwTZh1Xo7vvw/s400/Kevin+East+fundraiser+18.8.17.jpg" width="400" /></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="1475" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQdiFk9DYiU4bSQYfr5zWOGv8U_HkeROAnY1-LDKN7VGKEZFEncEjt7DJ28rpi_PScWHd0wRzLSsWwPI0_U4LtaC-g2nroF6Fv_CQOeloZyuqjy6vt_yIevsumQAGm6yVu1XdA4W6dNsM/s320/Kev+East+family+and+Prof+D.jpg" style="margin-left: auto; margin-right: auto;" width="294" /></td></tr>
<tr align="center"><td class="tr-caption"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof
Chris Denton presenting a plaque to Kevin's daughter, Michelle, and
wife, Debby, for funds raised in Kevin's memory for medical research at
the Unit. Thanks to Michelle for the photo.</span></td></tr>
</tbody></table>
<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/05/scleroderma-awareness-month-june-2018.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Global Patient
Profiles Campaign Index, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/index-scleroderma-raynauds-awareness.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of Medical
Research and Awareness Raising, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/04/medical-research-and-awareness-raising.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">NIHR Video: 'My
Experience of Clinical Trials', Click <a href="https://www.youtube.com/watch?v=Di7IuS88bKI&feature=share" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-3-medical-research-areas-of.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-2-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/week-1-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/why-research-and-patient-profiles.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2017 Global Patient
Profiles Campaign Introduction, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-june-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">'Being your own
awareness advocate', Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/04/living-dream-being-your-own-raynauds.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness
Month Flashback 2017, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/flashback-scleroderma-awareness.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Scleroderma Awareness
Month Flashback 2016, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/june-scleroderma-awareness-month.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My 2016 Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/05/scleroderma-awareness-month-2016.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">2016 Campaign Video, Click
<a href="http://blog.raynaudsscleroderma.co.uk/2018/04/scleroderma-awareness-month-2016-atoz.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">March 2018 Autoimmune
Disease Awareness Month, Click <a href="http://blog.raynaudsscleroderma.co.uk/2018/03/scleroderma-march-autoimmune-disease.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTQGRzLv338JJn-8BkTe54QYunNCosvY0nZIbhoU1YZAeqKnqay4JfiouHRTiBcmycO7WCGHncJSfxNYtq684JGWrlMMHSDl0qgwopyH4dy-iQZq3ZTw_E9UA5eSZx6owUMYGYTkOKHH0/s640/WSD+2018+April.jpg" width="640" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2017, 29th June, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/07/29th-june-world-scleroderma-day-2017.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2016, 29th June. Origins of the date, Click <a href="http://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">World Scleroderma Day
2015, 29th June. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="319" data-original-width="600" height="340" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_iMyKytQ_u5khBwvEtK0Jvz0GDzUiyhgBktkiLWJJJZYLL64D1twKHMa5kkslWRJgzfi2oLVU1DfAPzBGBzEA6_FwRgjdb6s21x4pcu4LTVddhBwSCQkgFq3FowJkgZdc6cx1d4-aAw/s640/TwImg-20160419-230821.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">James Carver, myself, Prof Chris Denton</span></td></tr>
</tbody></table>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015. </span><br />
<br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;">I am immensely grateful to
James Carver MEP for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma. </span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 106%;"><br /></span>
</div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view the presentation, Click <a href="https://www.youtube.com/watch?v=KQimB_F2l_4" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To view my article 'Why Global Collaboration is Important', Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/03/why-global-collaboration-is-so.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>All</b> patients included within the global patient profiles campaign, highlight the <b><span style="color: red;">URGENT</span></b> need for an <b>investment in medical research</b>, as well as: </span><br />
<br />
</span><br />
<div style="text-align: center;">
<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Early Diagnosis </span></b></span></div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres </span></b></span></div>
<div style="text-align: center;">
<span style="color: red;"><b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></b></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="color: red;"><b>Access to innovative medicines</b></span> </span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><b>ALL </b>being, crucial factors for best practice management and care. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To read my articles:</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Importance of an early diagnosis, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Taking Part in Clinical Research Trials, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk8dbYkGayrolSMluKay-AcC3Bc-LIg_kyaNmSkJoV9ylu9by-lR-Yv-3WamHbK7rf-RsZBv_L0EH9djkbBQ9ZYDa_B09x4-N8BlGOGgv2qMAFJQSXkl1TjKm6jTuodSRsmlPt0dttl6g/s400/2016+Day+30.jpg" width="400" /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Importance of a Multi Disciplinary Medical
‘Dream Team’, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2018/04/the-importance-of-multi-disciplinary.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Expert Specialist Centres, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">My Skin is Cured from Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">UK Guidelines for Managing and Treating
Scleroderma, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Fatigue, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/fatigue-in-raynauds-scleroderma-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Mobility, Click </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://raynaudsscleroderma.blogspot.co.uk/2017/05/mobility-scleroderma-raynauds-rare.html" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">here</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="mso-spacerun: yes;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Diet <span style="font-family: "arial" , "helvetica" , sans-serif;">and nutrition, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html" target="_blank"><span style="color: blue;">here</span></a></span></span> </span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Raynaud's, Click <a href="http://raynaudsscleroderma.blogspot.co.uk/2017/10/how-to-diagnose-raynauds-invisible.html" target="_blank"><span style="color: blue;">here</span></a> <span style="color: blue;"><span style="color: blue;"><span style="color: blue;"><span style="color: #0070c0;"> </span></span></span></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">This year, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sept 2017</span></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Prof Chris Denton and I, Sept 2017</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">I am eternally grateful to the global scleroderma
trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and
dedication to unlocking the scleroderma enigma, is nothing other than,
superhuman. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I am truly humbled and inspired by their work
ethic. I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">1<sup>st</sup> March 2004, I qualified as a self
employed practising barrister. Further to having been told in 1997, by my
diagnosing doctor, that I was looking at a 15month prognosis. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, <a href="http://blog.raynaudsscleroderma.co.uk/2017/06/nicola-whitehill-uk-june-scleroderma.html" target="_blank"><span style="color: blue;">here</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">For latest updates follow: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Facebook Page: </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.facebook.com/RaynaudsSclerodermaGlobal/" target="_blank"><span style="color: blue;">Raynauds Scleroderma Awareness Global Patients</span></a> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Twitter: @SclerodermaRF @RaynaudsRf </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Google Plus: <a href="https://plus.google.com/communities/115644437712711107914" target="_blank"><span style="color: blue;"><span style="mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">RaynaudsSclerodermaAwarenessGlobalPatients</span></span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#SclerodermaFreeWorld
#RaynaudsFreeWorld </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 101%;">Living the dream, scleroderma style. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Please </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="https://www.justgiving.com/fundraising/sclerodermaunit-royalfree" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">DONATE</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> to help
fund medical research at </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><a href="http://www.scleroderma-royalfree.org.uk/" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The Scleroderma Unit, The Royal Free Hospital, London</span></a></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">100% of your monies will be used for medical
research purposes <b>only</b>. </span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">No wages or admin costs. Thank You.</span> </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">#HOPE </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last Update: June 2018</span></div>
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Nicola Whitehillhttp://www.blogger.com/profile/11048870026214170361noreply@blogger.com0