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

January 9, 2019 Columns by Nicola Whitehill

A New Year and New Challenges

I survived the holidays! As fellow patients living with chronic, degenerative, rare diseases know all too well, there is no holiday from our daily myriad symptoms. The holidays can be isolating and difficult, as sometimes I am physically unable to join festivities. I am hypervigilant about…

December 19, 2018 Columns by Nicola Whitehill

Christmas Wishes and a New Year to Celebrate

The festive holiday season is here. To mark the occasion, check out my little “dream team” Christmas jumper video. Christmas jumper day. (All photos courtesy of Nicole Whitehill) As patients living with a chronic, debilitating, and rare autoimmune disease, we know all too well…

October 24, 2018 Columns by Nicola Whitehill

Looking Back on This Year’s Invisible Disabilities Week

Invisible Disabilities Week took place from Oct. 14-20. The Invisible Disabilities Association explains how those with invisible disabilities can be misunderstood: “People often ask us to define invisible disability. To define invisible disability in simple terms is a physical, mental or neurological condition that…

October 10, 2018 Columns by Nicola Whitehill

October Is Raynaud’s Awareness Month

October is Raynaud’s Awareness Month. It is also the month when the beautiful autumnal shades over here in the U.K. remind me that my winter “full-time hibernation” is looming. My 50 shades of blue “party trick,” where my hands and feet change color…

September 26, 2018 Columns by Nicola Whitehill

50 Shades of Blue

Here in the U.K., autumn has arrived. The color changes of the natural landscape at this time of the year are stunningly beautiful. This annual display of nature showing off its true colors provides a reminder that winter is on its way. And winter is the nemesis season for…

September 12, 2018 Columns by Nicola Whitehill

I’ve Found My Own Scleroderma Tooth Fairy

Here in the Northern Hemisphere, the summer holidays have finished. However, as scleroderma patients, we know all too well that we do not have a holiday from this diagnosis. More often than not, the management of the multi-complex symptoms makes for a full-time job. I have previously…

August 29, 2018 Columns by Nicola Whitehill

Gastroparesis Awareness Month: Tests

August is Gastroparesis Awareness Month. In this column, I highlight some of the tests carried out to determine stomach damage levels and the overall productivity of the digestive system process. Gastroparesis occurs when the stomach cannot pass food down to the small intestine, thereby…

Recent Posts