Tuesday, 11 April 2017

Living the dream, being Your Own Raynaud's Scleroderma Patient Advocate - Nicola Whitehill

Nicola Whitehill (diagnosed in 1997, aged 24) and the Dream Team

Living with a rare disease brings along many challenges, not least, becoming an expert in your own medical condition. 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 cure. 

I have always considered myself to be a ‘lucky scleroderma’ patient in that, I have minimal internal organ damage, with my Gastro-Intestinal system and my Musculo-Skeletal systems taking the biggest hit. 

I detail more of my 'tin-man' like symptoms here

My diagnosing Doctor told me back in 1997, that I would be in a wheelchair by Christmas (3 months away, at that time), I was looking at 15 months as a prognosis, and to give up my idea of being a barrister (professional advocate). He then prescribed me a cocktail of immunosuppressants and steroids. I described more about this here
A year later, I changed my medical care to that of the global expert and trailblazer Prof Chris Denton at The Royal Free Hospital in London, and almost 18 years to the day from when I first dragged my painful, stiff, swollen body there, Prof Denton confirmed to me that my skin is now cured from scleroderma.  Read more 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

However, it really is a full time job to manage my symptoms,click here with me using all of my ‘spare time’ devoted to the Raynaud's and scleroderma awareness plight.

I have now been writing my column at Scleroderma News for a year. 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.

Here is the link to the index over the course of the year

As I detailed and set out at the start of my Column last year, it was, and still remains my intention to make the content of my articles educational and informative, from not just the raynaud's scleroderma patient perspective, but also from the rare disease patient’s perspective in general, combined with being a voice for patients by presenting the true reality of our daily experience when living with this body hijacker. I very much hope that I have achieved this with the content of my Column, as well as, with the content of this blogspot.

During the first few years of having been told those 3 words, ‘You have Scleroderma’ I was not overtly fluent at speaking about the disease, and was more focussed on having my head in law books so that I could pass my exams. 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. 

Last year, I started my ‘Raynauds Scleroderma Awareness Global Patients’ Facebook page, in Anne’s memory. This Facebook Page is linked with this blog.

As well as the Google Plus community:


During the summer of 2013 my 'incognito' status came to a sudden end, by way of me sharing my 'tin-man' like symptoms.

Although this aspect to scleroderma puts me under house arrest, along with my Raynaud’s super-sensitivity, I have been actively following and participating in the work of the APPG on Rare, Genetic and Undiagnosed conditions here in the UK, chaired by Ben Howlett MP.

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 the Rare Disease Lead at Birmingham Children’s Hospital.

Nicola Whitehill, Ben Howlett MP

I wrote about the day, to read more:

I have taken part in several live Twitter sessions, using my cosmicfairy444 alter ego, which Ben and Rare Disease UK have hosted live.

In essence, the golden hallmarks for the rare disease patient best practice care are: 

- Expert Specialist Centres providing expert coordinated care
- Speedy access to innovative medicines to prevent life threatening damage

The  UK Rare Disease Strategy sets out further details.

28th March 2017, was a very encouraging day for the UK rare disease community. 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.

To read the full transcript of the debate click here

To watch the televised recording starting at 16.25 click here

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.

April 2017 
Nicola Whitehill 30.11.16 'My skin is cured from Scleroderma', Royal Free Hospital

An edited version of this article was published by  sclerodermanews.com  

To read my articles:
The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here 
BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease click here  
EULAR guidelines for treatment of systemic sclerosis scleroderma, click here  

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.
Living the dream, scleroderma style, hoping for a cure
#SclerodermaFreeWorld #RaynaudsFreeWorld

29th June World Scleroderma Day. Read more here  

Scleroderma Awareness flashback 2016. Read more here 

Please use the icons below to share this article #SclerodermaAwareness
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 
To view the Facebook page Scleroderma Awareness Month 2016 campaign images Click 
To view Facebook page Photo Album ‘Wellbeing Side to living with Raynaud’s and Scleroderma’ Click here

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