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

June 23, 2016 by Nicola Whitehill

DAY 24 Scleroderma Awareness Month: DIGITAL ISCHAEMIA Management

  Digital ulcers are more often than not a scleroderma patient’s nemesis. They used to be extremely troublesome for me, until I started taking bosentan continuously in autumn 2012. This requires me to have bi-monthly blood tests, which were monthly, for the first eighteen months of taking the drug.

June 19, 2016 by Nicola Whitehill

DAY 20 Scleroderma Awareness Month: BONES, JOINTS, MUSCLES

  DAY 20  Scleroderma Awareness Month:  BONES, JOINTS, MUSCLES Most scleroderma patients will experience symptoms relating to their musculoskeletal system, including their bones, and in some cases this can lead to osteoporosis. Again, it is important to note that no two scleroderma patients will present with the exact…

June 18, 2016 by Nicola Whitehill

DAY 19 Scleroderma Awareness Month: CALCINOSIS

DAY 19  Scleroderma Awareness Month: CALCINOSIS Today’s topic is the debilitating, painful symptom of calcinosis. It is important to note that not every scleroderma patient will experience calcinosis, since no two scleroderma patients present with the exact same set of symptoms. Calcinosis is more prevalent in the diffuse…

June 16, 2016 by Nicola Whitehill

DAY 17 Scleroderma Awareness Month: THE LUNGS

DAY 17  Scleroderma Awareness Month: THE LUNGS As highlighted in the diagram above, lung involvement in scleroderma patients can be a life threatening complication, if not diagnosed and managed early on in the disease process. Lung involvement, compared to other organ involvement, currently, carries the highest threat to…

June 15, 2016 by Nicola Whitehill

DAY 16 Scleroderma Awareness Month: THE HEART

DAY 16  Scleroderma Awareness Month: THE HEART Scleroderma can affect all body parts, including the heart. This can be seen in the limited forms and the diffuse forms – see my Day 1 Scleroderma Awareness Month blog post. As can be seen in the above…

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