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 4, 2016 by Nicola Whitehill

DAY 5 Scleroderma Awareness Month – Diagnostic Tests

DAY 5  Scleroderma Awareness Month DIAGNOSTIC TESTS Early diagnosis is crucial to prevent life threatening damage to the scleroderma patient. For, if the disease has progressed to a level causing irreversible damage, even a stem cell transplant or organ transplant (for the most severely affected patients), may not…

June 3, 2016 by Nicola Whitehill

Day 4 SCLERODERMA Awareness Month

  The symptoms of Scleroderma can differ from patient to patient, with no two patients displaying the exact same set of symptoms. This makes diagnosis and treatment more challenging to meet the needs of the individual patient. In all types of scleroderma (see Day 1 of…

June 2, 2016 by Nicola Whitehill

Day 3 SCLERODERMA Awareness Month

  Scleroderma is a systemic disease which can affect the entire body. This includes body organs, muscles, nerves, glands…. EVERYwhere! This makes for a very challenging time at tying to manage and control the symptoms, since there is no cure. The treatments available are symptom suppression agents at…

June 1, 2016 by Nicola Whitehill

Day 2 SCLERODERMA Awareness Month

  Scleroderma is systemic and can affect the entire body, depending on the type of scleroderma present in the body. This can be identified by specific blood screening and other diagnostic tests — see later on in the week for more information on this! The entire body is…

June 1, 2016 by Nicola Whitehill

Day 1 SCLERODERMA Awareness Month

Each day, here at Scleroderma News, for the duration of Scleroderma Awareness month, I will be posting daily information and facts about Scleroderma, which I hope will be of interest. An empowered, educated patient makes for a better “scleroderma journey,” as prevention is better than cure, and there…

May 11, 2016 by Nicola Whitehill

Hypopigmentation in Scleroderma: Appearance Change

A Spotlight on the Ssc Scleroderma Symptom Hypopigmentation Sarah Jatto from Clapham, South London was diagnosed in 2009 with diffuse Ssc at age 19. Sarah has very kindly agreed to share her experience with the symptom of Hypopigmentation. ‘Hypopigmentation, also known as vitiligo, is something I…

Recent Posts