Raynaud's Social Media Twibbon.
Raynaud's Awareness Month, October.
The Raynaud's Unit, the Royal Free NHS
Hospital, London.
Raynaud’s Awareness.
#RaynaudsFreeWorld #Research
If you would
like to add the Raynaud's twibbon to your Facebook / social media, Profile
Picture - please Click here
To view
Nailfold Capillaroscopy equipment (used to identify possible blood vessel
damage), Click here
My Raynaud’s reality, Click here
To read My ‘Invisible
Disability’ experience, Click here
 |
| Hottest day of 2013 - Im wearing Ugg boots and gloves to try and prevent a Raynaud's attack! |
'How to diagnose Raynaud's', Click here
50 Shades of Blue, Click here
Raynaud's Awareness 2018, Click here
All of your
monies will be used for medical research purposes only, lead by the world trail
blazer Dr Kevin Howell.
 |
| Dr Howell and I, Sept 2017 |
Facebook Page: Raynauds
Unit Royal Free Hospital
Twitter, You Tube, Instagram: @RaynaudsRf
To Read My Articles:
Leaving a gift in my Will, Click here
Planning for the Future, Click here
Rare Disease Day 2019:
Leaving a Legacy Gift, Click here
Celebrating 20 years of being a patient at the Scleroderma Unit, Click here
2019 New Challenges, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's,
Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
Order your awareness
t-shirt here
 |
| June 2019 |
 |
| Huge Thanks to Ellen, Dianne and the Royal Free Charity team |
Importance of an early diagnosis, Click here
Unmet clinical needs, Click here
Taking Part in Clinical Research Trials, Click here
The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here
Expert Specialist Centres, Click here
My Skin is Cured from Scleroderma, Click here
UK Guidelines for Managing and Treating Scleroderma, Click here
Fatigue, Click here
Mobility, Click here
Diet and nutrition, Click here
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, Sept 2017 |
This year, 2019, I am celebrating 21 years of being a patient at the
Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist,
research centre.
Read more, here.
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.
I am truly humbled and inspired by their work ethic and commitment to
their patients.
I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004.
1st 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.
Read more about me, here
 |
| Chat Magazine 16.5.19 |
World Scleroderma Day 2018, Click here
World Scleroderma Day 2017, 29th June, Click here
World Scleroderma Day 2016, 29th June. Origins of the date, Click here
 |
| James Carver, myself, Prof Chris Denton, at The European Parliament 2015. |
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.
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here
Week 1, 2017 Patient Profiles: Introduction to multi complex disease,
Click here
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here
2017 Global Patient Profiles Campaign Introduction, Click here
'Being your own awareness advocate', Click here
Scleroderma Awareness Month Flashback 2017, Click here
Scleroderma Awareness Month Flashback 2016, Click here
RARE DISEASE DAY:
The theme to 2018 year's Rare Disease Day
was Research
Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma,
Raynaud's, Autoimmune Rare Disease, Click here
2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception
2017 Rare Disease Day Flashback
Rare Disease Day is a fantastic opportunity for the entire rare
disease community to shine a spotlight on their reality, combining as one
unified voice. Where, at least one commonality presides –
Medical Research provides the brightest light
for the illumination of the rare disease
patients’ plight.
I highlighted other areas of medical research interest within Week 3
of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.
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:
Early
Diagnosis
Expert
Specialist Centres
Access
to Innovative Medicines
Where MEDICAL RESEARCH investment is
VITAL.
Research is the key
For latest updates follow:
Facebook, Twitter, You Tube, Instagram:
SclerodermaUnit Royal Free: @SclerodermaRF
RaynaudsUnit Royal Free @RaynaudsRf
Facebook Pages:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Please DONATE
to help fund medical research into the cause and cure for Raynaud's, at the
Raynaud's Unit, The Royal Free Hospital, UK.
Thank You.
No comments:
Post a Comment