Living The Dream - Nicola Whitehill

‘Now that the weather is better, you must be better’ This is a phrase which, if I had a pound or a dollar for every time a person told me this, my fundraising efforts for Prof. Chris Denton’s research at the scleroderma unit at The Royal Free Hospital…

During Scleroderma Awareness month in June, the first national U.K. guidelines for the treatment of scleroderma (systemic sclerosis) were published in the international journal of Rheumatology, as well as on the British Society for Rheumatology (BSR) website. These guidelines were put together by the BSR and BHPR (British Health Professionals in Rheumatology)…

  Expert specialist centers are essential requirements in ensuring for the best care and treatment of scleroderma patients, as well as for the rare disease patient in general. The experience, knowledge, and understanding of a medical specialist not only offers increased comfort to the patient, but the greatest likelihood of an early diagnosis, optimal care,…

Well, unless you had a month away from your internet connection, you probably know that June was Scleroderma Awareness Month, with World Scleroderma Day highlighting the end of the month on the 29th. However, as we scleroderma patients know only too well, we live with scleroderma for the remaining 364…

Scleroderma is a systemic disease that can affect the entire body — the treatment of which requires a multidisciplinary approach in medical care, best provided by an expert specialist centre. As has been emphasized in most of my daily awareness posts, an early diagnosis is crucial for best patient care…

It is finally here! Having counted down the days and months since the spring, TODAY is finally World Scleroderma Day. To read my post ‘June is Scleroderma Awareness Month,’ click here. To read my post about how the date for World Scleroderma Day was chosen, click …

DAY 28  Scleroderma Awareness Month: Complications, Skin Discoloration, Soft Tissue Damage As discussed in the first few days of Scleroderma Awareness Month, systemic scleroderma can affect any part of the body. See DAY 1  — Scleroderma Awareness Month to learn more about Scleroderma subgroups. See…

DAY 27  Scleroderma Awareness Month: TELANGIECTASIA Telangiectasia are another symptom of Scleroderma, which although not life threatening as such, can be extremely distressing to the patient due to the change in appearance of the skin. As can be seen in the above image, my face has taken on…

Today’s image and post focuses on the lower gastro-intestinal tract. DAY 11 Scleroderma Awareness Month focused on the gastro-intestinal tract in general. To read about this, click here. DAY 21 Scleroderma Awareness Month focused on the upper gastro-intestinal tract. To read about this, click…

  Pain is a universal symptom with disease and illness, and especially so with the autoimmune arthritic conditions. I cannot remember the last day whereby I did not have any pain. As with most of the symptoms with scleroderma, no two patients will present with the exact same…

  Digital ulcers are more often than not a scleroderma patient’s nemesis. They used to be extremely troublesome for me, until I started taking bosentan continuously in autumn 2012. This requires me to have bi-monthly blood tests, which were monthly, for the first eighteen months of taking the drug.

As discussed in the Day 3 Scleroderma Awareness Month post – Scleroderma can affect all body parts. To read this post, click here. I also focussed on the Kidney and Renal involvement for the Day 15 Scleroderma Awareness Month…