It’s Up to Us

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There’s a lot going on in scleroderma research, particularly regarding efforts to understand the causes of fibrosis—what makes skin get too thick—as well as possible treatments. Just this October, a study published in Arthritis Research & Therapy found that “two approved treatments for pulmonary arterial hypertension— Tracleer (bosentan) and Opsumit (macitentan)—can block a molecular pathway that promotes fibrosis in systemic sclerosis (SSc), and may be a potential therapy for these patients as well, according to an early study.” You can find a summary of the study here, on the Scleroderma News website.

I’m particularly interested in this study, because I have taken Tracleer for years, and I noticed within a few months of starting this medication that skin on my face and backs of my hands had loosened a bit. I’ve discussed this with my rheumatologists, who agreed with my suspicion that the Tracleer may have been responsible. One note of caution: this is a very expensive drug. You need good health insurance to pay for it. But the study results are certainly encouraging. Not my imagination. Not by a long shot.

Path-breaking research into the causes of scleroderma, as well as the ongoing search for a cure, depends on all of us to contribute in any way we can—with financial donations as well as participation in research studies. As December 31 draws near, I hope you’ll join me in making a gift to the scleroderma organization of your choice. Here are some links:

We may not see a cure for this cruel disease in our lifetimes, but progress is being made. Each year brings more insight and increasing hope that we will get the answers, sooner than later. Thank you for your help.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: Connor McSheffrey

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