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Nikki Whitehill avatar
Nikki Whitehill

SclerodermaUnit-Royal Free

a cure is needed for scleroderma and Raynauds for Royal Free Charity because 100% donation will be used for medical research

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£3,459.34
raised of £1,000,000 target
by 49 supporters
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Royal Free Charity

We fund Little Touches & Big Differences to support Royal Free, Barnet & Chase Farm

Charity Registration No. 1165672

Story

I have set up this page to represent patients who want to raise desperately needed funding for medical research into the rare disease scleroderma and raynauds phenomenon.

The entire donation will go towards funding essential medical research with no admin or employee wages.

In 1997, aged 24, I was diagnosed with diffuse Systemic Sclerosis (scleroderma) and Raynaud's. I was given a 15month prognosis. A year later, I changed my medical professional to the super human beings Prof Dame Black and Prof Denton at the Royal Free hospital. 

I am now, no longer able to continue in my 60 hour week role as a barrister, as managing my symptoms is a full time job! However, I know that I am a lucky scleroderma survivor, as I have minimal internal organ damage.

Scleroderma affects the immune, vascular and connective tissue systems of the body. Raynaud's causes narrowing and constriction of the blood vessels which can lead to amputation if not treated urgently and correctly. 

I am sharing my 20 year patient experience in the hope to improve the global patient landscape for scleroderma patients, and the rare disease community as a whole. 

I am an expert patient adviser to NHS England, The European Medicines Agency (EMA), European Rare Disease Organisation (Eurordis), British Society of Rheumatology (BSR), The Journal of Scleroderma and Related Disorders (JSRD).

I am a member of the World Scleroderma Foundation.

To learn more of my story please visit:

http://www.eurordis.org/news/living-with-scleroderma-and-raynauds-disease 

I have a column with SclerodermaNews.com: 

http://sclerodermanews.com/nicolas-scleroderma-blog/

As well as, my RaynaudsSclerodermaAwarenessGlobalPatients blog:

https://raynaudsscleroderma.blogspot.co.uk/

and the facebook page 'Raynauds Scleroderma Awareness Global Patients'. for up to date info and global patient interaction, awareness and support.

https://www.facebook.com/Raynauds-Scleroderma-Awareness-Global-Patients-1684464855104321/

Facebook page 'Healing Loving Scleroderma with Real Food': 

https://www.facebook.com/healinglovingsclerodermawithrealfood/?fref=ts

Facebook page 'SclerodermaUnit Royal Free Hospital'

https://www.facebook.com/Scleroderma-Unit-Royal-Free-Hospital

Facebook page 'RaynaudsUnit Royal Free Hospital'

https://www.facebook.com/Raynauds-Unit-Royal-Free-Hospital

Google Plus Global Community:

https://plus.google.com/communities/115644437712711107914

My other blogs: 

http://www.cosmicfairy444.blogspot.co.uk/

http://pro-vide-law.co.uk/author/nicola-whitehill/

I hope to combine my personal experience and global Ssc roles, along with my professional qualifications and pharmaceutical industry background, to be a true representative patient voice for the global Ssc patient community.

United, together, globally, we will crack the Scleroderma code - with investment in medical research. 

There is currently no cure for either Scleroderma or Raynaud's. Please help by donating to Prof Denton's research fund. Thank You.

Research publications so far:

http://www.ucl.ac.uk/rheumatology-and-connective-tissue-diseases/publications

Abstract presentations from the 2016 Systemic Sclerosis World Congress:

http://raynaudsscleroderma.blogspot.co.uk/2017/06/journal-of-scleroderma-and-related.html

#SclerodermaFreeWorld

Photos

83
  • 29th June World Scleroderma Day 2017
  • scleroderma and raynauds infographic
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