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 disease affecting the vascular, connective tissue and musculoskeletal systems. Thickening of the skin is a typical symptom.
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.
RESEARCH is the theme for Rare Disease Day 2018.
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.
Last year, for my Scleroderma Awareness Month Campaign 2017, I focused on RESEARCH and global patient profiles, highlighting the many unmet clinical needs to the patient.
UK guidelines for best practice:
Current trials taking place at the Scleroderma Unit:
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.
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.
In December 2016, I was delighted to hear Prof Denton confirm to me that 'my skin is cured from scleroderma'.
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.
I am a member of the World Scleroderma Foundation.
I have a column with SclerodermaNews.com:
As well as, my RaynaudsSclerodermaAwarenessGlobalPatients blog:
and the facebook page 'Raynauds Scleroderma Awareness Global Patients'. for up to date info and global patient interaction, awareness and support.
Facebook page 'Healing Loving Scleroderma with Real Food':
Facebook page 'SclerodermaUnit Royal Free Hospital'
Facebook page 'RaynaudsUnit Royal Free Hospital'
Google Plus Global Community:
My other blogs:
I hope to combine my personal experience and global scleroderma (Ssc) roles, along with my professional qualifications and pharmaceutical industry background, to be a true representative patient voice for the global Ssc patient community.
My childhood dream was to be a barrister. Scleroderma tried to destroy this dream. With Prof Denton's help I achieved this dream on 1st March 2004. Sadly, I am no longer physically able to carry out the role,
My dream now, is #SclerodermaFreeWorld, where, investment in medical research is ESSENTIAL .
Please help by donating to Prof Denton's research fund. Thank You.
Research publications so far:
Abstract presentations from the 2016 Systemic Sclerosis World Congress: