Raynaud's Social
Media Twibbon.
Raynaud's
Awareness Month, October 2018.
Scleroderma,
Autoimmune, Rare Disease
Raynaud’s
Unit, Royal Free Hospital, UK. Facebook Page
If you would like to
add the Raynaud's twibbon to your Facebook Profile Picture - please Click here
To view Thermograph Video, Click here
To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
here
To read My ‘Invisible
Disability’ experience, Click here
'How to diagnose Raynaud's', Click here
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.
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 |
#RaynaudsFreeWorld #RaynaudsAwarenessMonth
Facebook Page: Raynauds Unit Royal Free Hospital
Twitter: @RaynaudsRf
Living the dream,
hoping for a cure ....
This year, 2018, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, Sept 2017 |
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.
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.
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.
I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld #RaynaudsFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, here
Global Patient
Profiles Awareness Campaign 2018 Video, Click here
Global Patient Profiles Awareness Campaign 2018 INDEX, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
Becoming a PRA for the NIHR, 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
My 2016 Scleroderma Awareness Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click here
2016 Campaign Video, Click
here
March 2018 Autoimmune
Disease Awareness Month, Click here
World Scleroderma Day
2017, 29th June, Click here
World Scleroderma Day
2016, 29th June. Origins of the date, Click here
World Scleroderma Day
2015, 29th June.
 |
| James Carver, myself, Prof Chris Denton |
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.
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
To view my article 'Why Global Collaboration is Important', Click here
RARE DISEASE DAY:
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 Day Patient Voice
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.
VIDEO
VIDEO
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. Abstracts from 2016 World Congress, Click here
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: Raynauds Scleroderma Awareness Global Patients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#SclerodermaFreeWorld #RaynaudsFreeWorld
October 2018.
October 2018.
No comments:
Post a Comment