Living The Dream - Nicola Whitehill

Almost 18 years to the day from my visit to the Scleroderma Unit at The Royal Free Hospital in London, I was exhilarated to have been told on Nov. 30 by world-renowned scleroderma expert Prof. Chris Denton that my “skin is now cured from…

In March, I wrote about the amazingly brave young man, Wyatt the Warrior. Wyatt was diagnosed with localized scleroderma two years ago, when he was 8. Wyatt, now 10, and his twin brother Weston, have had a busy six months attending medical appointments, as well as…

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…

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,…

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…

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…

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…

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 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…

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…

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”…

This week, Scleroderma News reported on the recent study, “Watermelon stomach and colon in a patient with diffuse cutaneous systemic sclerosis,” published in the journal Modern Rheumatology. The news article informs us that: ‘GI complications, such as hemorrhages, low esophageal motility, and bacterial overgrowth, are common in…