Scleroderma, Raynaud's, Autoimmune Rare Disease.
|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|
The entire global Raynaud's and scleroderma community are extremely grateful to Anne for her tireless fundraising and awareness raising, and for all that she did to improve the lives of patients with this disease.
During the summer of 2013 my 'incognito' status came to a sudden end, by way of me sharing my 'tin-man' like symptoms.
|Nicola Whitehill, Ben Howlett MP, Dr Larissa Kerecuk|
This photo was taken last year, at the Rare Disease UK Parliamentary reception for Rare Disease Day 2016. It still remains a favourite and honour for me to have been in such good company.
Dr Larissa Kerecuk is a true superhero. She is the Rare Disease Lead at Birmingham Children's Hospital.
|Nicola Whitehill, Ben Howlett MP|
I wrote about the day, here
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.
Planning for the Future, Click here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
2017 Rare Disease Day Medical Research
2016 Rare Disease Day Patient Voice
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
To read about medical research at the scleroderma unit, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
|Prof Chris Denton and I, Sept 2017|
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
|Chat Magazine May 2019|
|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, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
|The global Raynaud's trailblazer - Dr Howell and I, Sept 2017|
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Raynaud's Autoimmune, Rare Disease Patient Advocate.
Scleroderma, Raynaud's, Autoimmune Rare Disease.