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

July 25, 2016 by Nicola Whitehill

The Magic of Summer? Scleroderma, Sun & Warm Weather

‘Now that the weather is better, you must be better’ This is a phrase which, if I had a pound or a dollar for every time a person told me this, my fundraising efforts for Prof. Chris Denton’s research at the scleroderma unit at The Royal Free Hospital…

July 21, 2016 by Nicola Whitehill

UK Guidelines for Scleroderma Treatment and Management

During Scleroderma Awareness month in June, the first national U.K. guidelines for the treatment of scleroderma (systemic sclerosis) were published in the international journal of Rheumatology, as well as on the British Society for Rheumatology (BSR) website. These guidelines were put together by the BSR and BHPR (British Health Professionals in Rheumatology)…

July 18, 2016 News by Nicola Whitehill

Needed: Expert Specialist Scleroderma Centers

  Expert specialist centers are essential requirements in ensuring for the best care and treatment of scleroderma patients, as well as for the rare disease patient in general. The experience, knowledge, and understanding of a medical specialist not only offers increased comfort to the patient, but the greatest likelihood of an early diagnosis, optimal care,…

July 11, 2016 News by Nicola Whitehill

Scleroderma Awareness Month: a Flashback

Well, unless you had a month away from your internet connection, you probably know that June was Scleroderma Awareness Month, with World Scleroderma Day highlighting the end of the month on the 29th. However, as we scleroderma patients know only too well, we live with scleroderma for the remaining 364…

June 29, 2016 by Nicola Whitehill

Day 30 Scleroderma Awareness Month – The Healthcare Dream Team

Scleroderma is a systemic disease that can affect the entire body — the treatment of which requires a multidisciplinary approach in medical care, best provided by an expert specialist centre. As has been emphasized in most of my daily awareness posts, an early diagnosis is crucial for best patient care…

June 28, 2016 by Nicola Whitehill

WORLD SCLERODERMA DAY 29th June

It is finally here! Having counted down the days and months since the spring, TODAY is finally World Scleroderma Day. To read my post ‘June is Scleroderma Awareness Month,’ click here. To read my post about how the date for World Scleroderma Day was chosen, click …

June 26, 2016 by Nicola Whitehill

DAY 27 Scleroderma Awareness Month: TELANGIECTASIA

DAY 27  Scleroderma Awareness Month: TELANGIECTASIA Telangiectasia are another symptom of Scleroderma, which although not life threatening as such, can be extremely distressing to the patient due to the change in appearance of the skin. As can be seen in the above image, my face has taken on…

June 24, 2016 by Nicola Whitehill

DAY 25 Scleroderma Awareness Month: PAIN and HAIR LOSS

  Pain is a universal symptom with disease and illness, and especially so with the autoimmune arthritic conditions. I cannot remember the last day whereby I did not have any pain. As with most of the symptoms with scleroderma, no two patients will present with the exact same…

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