|Nicola Whitehill (diagnosed in 1997, aged 24) and the Dream Team|
The rare disease patient’s holy grail is to actually receive a diagnosis, whereby a treatment care plan can then be put together, which at best, will be focussed on symptom suppression, since there is no known cure.
I detail more of my 'tin-man' like symptoms, here
He then prescribed me a cocktail of immunosuppressants and steroids.
I describe more about this, here
In 2015 I presented ‘Systemic Sclerosis – the patient’s perspective’ at the annual British Society for Rheumatology conference. To view the presentation, Click here
I receive no payment for my articles and set up my 'Just Giving' page, in the hope to generate funds specifically for medical research at the Scleroderma Unit led by Prof Chris Denton – to whom I am eternally grateful to, for his medical expertise and superhuman approach, to being of service to his patients and the global scleroderma community.
I very much hope that I have achieved this with the content of my Column, as well as, with the content of this article.
I would occasionally give radio interviews or magazine interviews, usually further to the persuasion from Anne Mawdsley, the Founder and President of the Raynaud's and Scleroderma Association, as it was then.
Sadly, Anne is no longer with us, having lost her battle with Raynaud's and scleroderma in 2014 after 30 years of living with the diagnosis.
|Anne Horton Mawdsley, campaigner and fundraiser, born 31 May 1942; died 12 October 2014|
During the summer of 2013 my 'incognito' status came to a sudden end, by way of me sharing my 'tin-man' like symptoms.
Dr Larissa Kerecuk is a true superhero. She is the Rare Disease Lead at Birmingham Children's Hospital.
|Nicola Whitehill, Ben Howlett MP|
I have taken part in several live Twitter sessions, using my @cosmicfairy444 alter ego, which Ben and Rare Disease UK have hosted live.
Following a debate led by Ben, Philip Dunne MP, Minister of State for Health has announced that NHS England will develop an implementation plan, by the end of the year, as to its commitments as outlined in the strategy.
I highlighted the importance of the strategy, here, within one of the articles which I wrote for Rare Disease Day 2017, the theme being 'Research - possibilities are limitless'.
I focussed on the 'Raynaud's scleroderma patient unmet research needs', here, within my second article, for honouring Rare Disease Day 2017.
March is Autoimmune Disease Awareness Month #ADAM
All in all, on a day to day level, every rare disease patient is co-erced in to a world where being their own advocate is not a choice, it is a necessity for survival and improvements.
|Nicola Whitehill 30.11.16 'My skin is cured from Scleroderma', Royal Free Hospital|
An edited version of this article was published here, in my Column with Scleroderma News. April 2017.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, 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
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice