Day 1 SCLERODERMA Awareness Month

Nicola Whitehill avatar

by Nicola Whitehill |

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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 is no cure, currently.

Today’s post is a ‘basic’ explanation as to the different types of Scleroderma and their involvement with the body. As pointed out on the diagram, there are no two patients who display the exact same symptoms, making diagnosis and treatment research more complicated. In addition, the multitude of overlapping symptoms seen with other autoimmune conditions, add to the mix. This can, however, be viewed as a positive, since by uniting together, research findings can be joined up, contrasted, and compared.

One of the main obstacles to a Scleroderma patient, and every rare disease patient, is a timely diagnosis. Life threatening damage is prevented by an early diagnosis because not everyone will respond to current available treatments, as the disease may have progressed too far, making later-diagnosed patients non-responsive to treatment.

Please feel free to comment on your experience and please share 🙂

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About the Author

Nicola Whitehill avatar
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.

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Day 1 Scleroderma Awareness Month, early diagnosis, Scleroderma, scleroderma types

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