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

Bringing Awareness to Gastroparesis This Month

August is Gastroparesis Awareness Month. Gastroparesis occurs when the stomach can’t pass food down to the small intestine, thereby affecting the digestion process. Gastroparesis is an unwelcome and debilitating symptom to most scleroderma patients, myself included. Symptoms include bloating, acid reflux, constipation, diarrhea, vomiting, feeling full after…

Happy 70th Birthday to the NHS: Thank You for Keeping Me Alive

On July 5, 2018, over here in the United Kingdom, the National Health Service (NHS) celebrated its 70th year since its set-up by then-Health Secretary Aneurin “Nye” Bevan. According to the NHS70 website, “For the first time, hospitals, doctors, nurses, pharmacists, opticians, and dentists were brought together under…

Scleroderma Awareness Month 2018: Unmet Clinical Needs

We are nearly a week into June, our annual awareness month, which presents a spotlight opportunity for raising awareness about our rare disease and our day-to-day reality of living with scleroderma. The theme for this year’s Rare Disease Day — like last year’s — is research, so…

New Challenges, New Activities

Living with a systemic, chronic, degenerative disease without a known cause or cure makes for a diary filled with medical appointments. Symptom management alone is a full-time job. I have a strict daily routine in place to minimize the severity of my ongoing symptoms. However, as every…

Medical Research and Raising Awareness

Spring has reluctantly arrived over here in the United Kingdom. An increase in the temperature is most welcome, even if it is only marginal due to my location. To make it out of winter without a body crisis by way of flare-ups or the like is, quite frankly,…