Nicola Whitehill,  —

Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis...... I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline 'The Real Life Tin Man' and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.

Articles by Nicola Whitehill

Scleroderma and Raynaud’s: The Fun Snatchers

Those three words — “You have scleroderma” — followed by — “and Raynaud’s” — have without doubt life-changing, if not life-threatening, consequences. In this column, I discuss the day-to-day impact these three words have, and the lifestyle adjustments and changes required to respect symptoms. Paradoxically, hearing those…

Flashback: Scleroderma Awareness Month 2017

Last month was Scleroderma Awareness Month, with June 29 being World Scleroderma Day. And, WOW, what a busy month it was for raising awareness of our multi-complex, rare disease! In this column, I discuss the importance of raising awareness, along with the results…

World Scleroderma Day 2017: Let’s Raise Awareness

World Scleroderma Day, June 29, 2017 Wehoo, Thursday, June 29, is World Scleroderma Day. This is our opportunity to showcase the rare disease scleroderma to the world to raise awareness — whether it be for fundraising purposes, for investment in research for that oh-so-desired cause and…

Scleroderma Awareness Month Kicks Off June 1, 2017

The first day of June marks the start of Scleroderma Awareness Month, and June 29 is World Scleroderma Day. Further to the theme of this year’s Rare Disease Day 2017 being “With Research, Possibilities Are Limitless,” I have made research the theme of my Scleroderma Awareness…

June is Scleroderma Awareness Month

June is Scleroderma Awareness Month, with June 29 being World Scleroderma Day. Sadly, as patients we all know too well that every day is “scleroderma day.” As such, I want to highlight the importance of maximizing Scleroderma Awareness Month, and provide some ideas for how you can get involved,…