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

Skin Cancer and Scleroderma

A few weeks ago, I went to my local hospital for a skin biopsy on the red lump that had developed on my forehead over the course of the last three years. To have lived with a diffuse scleroderma diagnosis for 19 years, and to have not had to have a…

For Raynaud’s Awareness Month, Show Your Colors

October is Raynaud’s Awareness Month. However, for Raynaud’s patients, everyday, whatever the month, is a Raynaud’s day. There is no cure. Raynaud’s is the constriction of blood vessels in response to a decrease in temperature, and/or stress. This narrowing of the blood vessels can be extremely painful,…

Skin Tests with Scleroderma

The skin is the largest organ in the body and, more often than not, will be affected by scleroderma, as the name “sclero” — thickening — and “derma” — skin — implies. The exceptions are a SINE scleroderma diagnosis, and a limited scleroderma diagnosis, both of which could present…

Scleroderma and the Role of Medical Research

The role of medical research is of huge importance to the scleroderma patient, and to rare disease patients in general. There is currently no cure for scleroderma, and the causative mechanisms still remain a mystery. That said, understanding the cause and cure is accelerating faster than ever before. Investment…

Scleroderma Diagnosis: What Can I Expect?

The month of September always prompts a trip down the memory lane — or, for me, the abyss that is September 1997. It was at that time, age 24, when I was diagnosed with Scleroderma — resulting in my life being turned upside down, forcing me to abandon most of…

Raynaud’s Seasonal Changes

Most scleroderma patients will experience Raynaud’s, the narrowing of blood vessels, as a secondary symptom. Raynaud’s can sometimes present as the diagnosing feature of scleroderma, however, this was not the case for me. Tight, puffy fingers and intense lethargy along with difficulty in swallowing …

The SKIN in Scleroderma

The skin is the largest organ in the body and is affected in most scleroderma patients. The exception to this rule is the limited subset version of scleroderma patients. On Day 1 in my Scleroderma Awareness Month posts, I focused on the different subsets of scleroderma…

A Long-Term Scleroderma Patient’s Annual Monitoring Tests

My diary is kept quite busy with medical appointments, which over the years has steadied in frequency due to my symptoms being managed and controlled better. However, should I have a flare with my symptoms, then obviously more medical appointments will follow. I am extremely grateful for my medical care…

The Scleroderma Olympian

Last week saw the start of the Olympic games in Rio de Janeiro, Brazil, with 206 nations participating. I have often likened my diffuse scleroderma experience/existence to being similar to that of an Olympian athlete, but without the athleticism and without any competition with anyone else — the “gold medal”…