“Your skin cancer has cleared.” 2018 started with a scleroderma-related, potentially life-threatening additional health challenge. A Bowen’s skin patch presented itself on my left knee. Last summer, I recognized the symptoms and knowing that the medication Efudix cream had…
Today, Feb. 28, is Rare Disease Day. This year’s theme is “Research.” https://sclerodermanews.com/wp-content/uploads/2018/01/NW-rdd-2017-video-research.mp4 Living with a rare disease is daunting in every way imaginable. Having been a diffuse scleroderma, rare disease patient for 21 years, I believe research provides immense hope. Hope that the desperately needed…
Today, Feb. 14, is Valentine’s Day. Scleroderma can affect the heart in various ways. Fibrosis of the heart can be life-threatening, and may contribute to pulmonary arterial hypertension. Upon initial examination and diagnosis, the heart should be assessed for any disease activity. Electrocardiogram…
Living with a rare disease that has an unknown cause and no cure is daunting in every way imaginable. For me, managing my scleroderma symptoms, combined with fatigue, mobility challenges, my nutrition and food ingredients is a…
2018 is looking to be a very busy and exciting year for scleroderma patients. Before I discuss some of the many events scheduled for the year: Thank you to those who contacted me during my time away from my column. I am slowly recovering from post-traumatic…
Invisible Disabilities Week, Oct. 15-21, started Sunday, combining with the ongoing October Raynaud’s Awareness Month campaign. It made this a very busy week for our global patient community with awareness-raising opportunities. I have detailed my Raynaud’s reality, highlighting the immense…
Sunday, Oct. 1, was the start of #RaynaudsAwarenessMonth 2017. As scleroderma patients, we know all too well how debilitating and painful the symptoms of Raynaud’s can be. In addition, the symptom control of the added extras, caused by a lack of blood supply in the scleroderma patient, include…
Here in the United Kingdom, summer is gradually transforming into autumn. The decrease in temperature can be seen by the change of color in the leaves, as well as a change in color to my fingers and toes. Even on a hot summer’s day, I struggle to maintain…
“You should get out more.” These words of advice were recently given to me by a friend, a non-scleroderma patient. I am sure this friend meant well. But on the cusp of my 20-year anniversary since my initial diagnosis, I…
In a few weeks, it will be my 20th anniversary of first hearing those life-changing words: “You have scleroderma,” followed by, “and Raynaud’s phenomenon. There is no cure. Your disease is so aggressive that you are looking at 15 months, maximum. Forget being a barrister.” I have written about…
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