Nikki Whitehill

SclerodermaUnit-Royal Free

Fundraising for Royal Free Charity
£3,863
raised of £25,000 target
Royal Free Charity

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RCN 1165672
We fund services, equipment & research to help our hospitals go further, faster

Story

I have set up this page to represent anyone who wants to raise desperately needed funding for medical research into the rare disease 'scleroderma' and Raynaud's phenomenon, at the Scleroderma Unit, The Royal Free Hospital, London. With Prof Chris Denton, world leading expert in the diagnosis, as the clinical lead.

The entire donation will be used for essential medical research purposes only, with no admin or employee wages etc.

Scleroderma is a chronic degenerative autoimmune rare disease affecting the vascular, connective tissue and musculoskeletal systems. Thickening of the skin is a typical symptom.

The body produces too much collagen.

Chemotherapy and  stem cell transplant is used as a treatment in an attempt to suppress symptoms.

There is currently no cure to the diagnosis, and little is known about its precise cause.

Early diagnosis is crucial to prevent any possible life threatening damage, along with, multi disciplinary follow up medical care headed by a specialist expert. 

Raynaud's causes narrowing and constriction of the blood vessels which can lead to amputation if not treated urgently and correctly.

Read more:

http://raynaudsscleroderma.blogspot.co.uk/2017/04/the-importance-of-early-diagnosis-and.html

Read more:

http://raynaudsscleroderma.blogspot.co.uk/2017/04/expert-specialist-centers-scleroderma.html

blog.raynaudsscleroderma.co.uk

RESEARCH provides immense hope to patients. ... Hope that a cure will be found, along with improved disease modifying agents. As well as, the cause to this rare autoimmune disease, being understood.

MY STORY:

In 1997, aged 24, I was diagnosed with diffuse Systemic Sclerosis (The type of scleroderma which affects the entire body), and Raynaud's. I was given a 15 month prognosis by my diagnosing doctor.

In December 1998, I became a patient at the Scleroderma Unit. I am eternally grateful for the medical expertise of the superhuman beings Dame Prof Black and Prof Denton.

Listen to my interview with John Smeeton of RoyalFreeRadio discussing RareDiseaseDay 2020 here:

https://www.youtube.com/watch?v=PQUH36KvpRc

Read more:

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

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!

Read more:

http://raynaudsscleroderma.blogspot.co.uk/2017/04/scleroderma-raynauds-rare-disease-full.html

However, I know that I am a lucky scleroderma survivor, as I have minimal internal organ damage.

In December 2016, I was delighted to hear Prof Denton confirm to me that 'my skin is cured from scleroderma'.

Read more: 

http://raynaudsscleroderma.blogspot.co.uk/2017/04/my-skin-is-cured-from-scleroderma.html

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), RareDiseaseUK, NIHR.

I am a member of the World Scleroderma Foundation.

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

About the charity

Royal Free Charity

Verified by JustGiving

RCN 1165672
The Royal Free Charity supports staff and patients across the Royal Free London NHS Foundation Trust. From small acts of kindness to huge investments in research, everything we do changes lives for the better. We support our hospitals to go further, faster – delivering impact locally and globally.

Donation summary

Total raised
£3,862.89
+ £248.00 Gift Aid
Online donations
£3,862.89
Offline donations
£0.00

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