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

Living Like the Real-life Tin Man, Scleroderma-style

Today, to tie in with Autoimmune Disease Awareness Month in March, I am going to focus on musculoskeletal symptoms of the condition. Stiff, inflamed, painful joints and muscles are hallmarks of a range of autoimmune diseases, with arthritis the most prevalent and commonly known, and diffuse scleroderma mimicking it.

Research is the Focus of Rare Disease Day 2017

https://sclerodermanews.com/wp-content/uploads/videos/nicola_blog.mp4 The theme for this year’s Rare Disease Day on Feb. 28 is “Research,” which is a most-welcome topic to Raynaud’s and scleroderma patients across the globe. Investment in medical research provides immense hope and some comfort to the rare disease patient living with a currently…

A Raynaud’s and Scleroderma Patient’s Nemesis Season: Winter

https://sclerodermanews.com/wp-content/uploads/videos/nicola-vlog.mp4 Here in the northern hemisphere we are in the midst of winter. In an attempt to minimize my Raynaud’s symptoms, hibernation began in October. This entails being under house arrest, unless I really need to go out. Such “special days” out are reserved for medical appointments…

Scleroderma: The Full-Time Job of Managing the Symptoms

Every scleroderma patient presents with differing symptoms. Diffuse/systemic scleroderma affects the entire body, making the need for a multi-disciplinary medical team paramount to ensure optimum patient care. Attending and preparing for medical appointments is a full-time job, even when the symptoms have stabilized. In the U.K. we are…

Mother Shares Update About Wyatt the Warrior

In March, I wrote about the amazingly brave young man, Wyatt the Warrior. Wyatt was diagnosed with localized scleroderma two years ago, when he was 8. Wyatt, now 10, and his twin brother Weston, have had a busy six months attending medical appointments, as well as…