Living The Dream

Living the Dream Scleroderma Style

‘Your Skin Cancer Has Cleared’

“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…

Rare Disease Day 2018: Research

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…

If Only We Had More Investment in Medical Research

  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…

The Pandora’s Box of Scleroderma

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…

October Is Raynaud’s Awareness Month

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…

Handling Raynaud’s and Digital Ulcers

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’

“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…