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…
‘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,…
Get regular updates to your inbox.