The first day of June marks the start of Scleroderma Awareness Month, and June 29 is World Scleroderma Day. Further to the theme of this year’s Rare Disease Day 2017 being “With Research, Possibilities Are Limitless,” I have made research the theme of my Scleroderma Awareness…
Everyone on the face of this Earth has gone through something that temporarily halts their life, similar to a “pause” button on a CD player. It could be something aggravating such as breaking a limb, or something stressful such as moving to another state. In those moments,…
I believe that there is a point when a scleroderma patient realizes that it is time to fully accept that they are unwell and commit to having the disease. Despite that this sounds like a one-way ticket to Depression City, it actually isn’t. The decision…
June is Scleroderma Awareness Month, with June 29 being World Scleroderma Day. Sadly, as patients we all know too well that every day is “scleroderma day.” As such, I want to highlight the importance of maximizing Scleroderma Awareness Month, and provide some ideas for how you can get involved,…
Many patients with scleroderma experience severe pain. Pain relief and management is a vital necessity for scleroderma patients. Especially because their pain can present itself in many formats, and at varying degrees. However, pain is often isolated within the patient, making it is invisible to others. Because of this, it is difficult…
It’s 9:30 p.m. on a Saturday night and I’m attempting to draw a perfect wing liner on my top eyelid, with my left-hand – even though I was born right-handed. I don’t use my right hand as much because, due to tight arms, it doesn’t reach my face. So, I’ve…
Writing about scleroderma is important. It helps to raise awareness, and with any luck, funding for research to help find a cure will follow. I believe that one of the most important sources of information comes from the patients themselves. There is nothing more real than reading…
Healthcare coverage is a regularly featured story in the 24-hour news cycle. People’s opinions vary widely on the issue, as do politicians’ thoughts on the matter. Debates rage, tensions grow, and deeper divides are formed as our government wrestles with this colossal controversy. Nestled at the heart…
A new year can bring a hopeful new mindset. A New Year’s resolution is like a magical cure for the illness known as “old habits.” We convince ourselves to believe that a new year will help us get back on track, even though we had the option all year to…
“Ahh, great, another day to spend in bed.” I’ll bet no chronically ill patient has ever said this. Living with the currently incurable rare diseases scleroderma and Raynaud’s has certainly meant that I have had to spend more time in my bed over the last 19 years…
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