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 14, 2016 by Nicola Whitehill

DAY 15 Scleroderma Awareness Month: KIDNEY / RENAL Involvement

DAY 15  Scleroderma Awareness Month: KIDNEY / RENAL Involvement Scleroderma can affect all parts of the body, and it is important to note that not every scleroderma patient will develop kidney related symptoms. Renal crisis occurs in 5% of patients, usually with the diffuse form, and usually, within…

June 14, 2016 by Nicola Whitehill

DAY 14 Scleroderma Awareness Month: FATIGUE

Fatigue is a well known, chronic, debilitating and severe symptom to the autoimmune disease patient, and especially so with scleroderma. I blogged about fatigue in April, to read the article click here. Managing this symptom can be extremely challenging. Living with constant exhaustion and lethargy, severely…

June 12, 2016 by Nicola Whitehill

DAY 13 Scleroderma Awareness Month: Factor XIII

  DAY 13  Scleroderma Awareness Month: Factor XII The Rheumatology clinical trials unit at The Royal Free Hospital in London are conducting a clinical trial to see if purified Factor XIII will be an effective treatment for scleroderma patients. Factor XIII is a component of the blood clotting…

June 11, 2016 by Nicola Whitehill

DAY 12 Scleroderma Awareness Month: Nicola Whitehill

DAY 12  Scleroderma Awareness Month: Nicola Whitehill Wehoo,….. as the image shows – today is my birthday, and how delighted I am, that I have made it to 43, 17 years post my initial medical prognosis expiry date. I am eternally grateful for the super…

June 10, 2016 by Nicola Whitehill

DAY 11 Scleroderma Awareness Month: Gastro-Intestinal Involvement

DAY 11  Scleroderma Awareness Month: Gastro-Intestinal (GI) Involvement Many patients diagnosed with scleroderma have gastro-intestinal problems with a multitude of symptoms, as can be seen in the image (above). The entire GI system can be affected, starting at the mouth (dry mouth, difficulty swallowing, gum recession, etc.) all the…

June 9, 2016 by Nicola Whitehill

DAY 10 Scleroderma Awareness Month: Skin Involvement

    One of the major organs affected by Scleroderma is the thickening of the skin, as the name implies, Sclero, meaning thick, derma, meaning skin. This is usually the first tell-tale symptom to prompt a diagnosis. Skin involvement can vary depending on the type of scleroderma, with…

June 9, 2016 by Nicola Whitehill

DAY 9 Scleroderma Awareness Month – DIGITAL ULCERS

Day 9  Scleroderma Awareness Month – Digital Ulcer Management Today’s image shows the current NHS England management guidelines for The Best Practice of Digital Ulcer Management. I was honoured to be the ‘scleroderma patient expert’ member of the NHS England medical team who put these guidelines…

June 6, 2016 by Nicola Whitehill

DAY 7 Scleroderma Awareness Month – RAYNAUD’S

DAY 7  Scleroderma Awareness Month Raynaud’s can be an initial symptom in the autoimmune patient (MS, Lupus, Fibromyalgia) and, which of course, includes scleroderma. It is important to emphasize that Raynaud’s can also present on its own, without any autoimmune involvement. The current understanding is that if a…

June 5, 2016 by Nicola Whitehill

DAY 6 Scleroderma Awareness Month: DIAGNOSIS GUIDELINES

DAY 6  Scleroderma Awareness Month Over the decades, more has gradually become known and understood about scleroderma and the symptoms which it presents. Today’s post is a copy of the current guidelines which are accepted globally, when reaching a systemic sclerosis, scleroderma diagnosis. Due to the multi complex…

Recent Posts