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Woman hopes to raise awareness of scleroderma

6/19/2014 - West Side Leader
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By Letter to the Editor

To the editor:

I am writing to alert your readers to a special awareness event about an issue that is very important to me. Nearly 30 million people in this country have a rare disease, but less than 12 percent of the American public can name one, and this June is Scleroderma Awareness Month, which works to educate people about one such unknown rare disease.

More than 300,000 people in the United States suffer every day from this vicious autoimmune disease. Unfortunately, not enough people in the U.S. know about scleroderma’s debilitating and destructive effects. Here are some facts about scleroderma:

  • Scleroderma is a serious, chronic disease that causes a person to produce too much collagen, which results in hard skin and internal organs. This can make it very difficult for people living with the disease to perform simple everyday tasks that you take for granted, like eating and breathing normally.
  • Scleroderma affects three to four times more women than men.
  • Scleroderma can mimic other autoimmune diseases, so it can be very difficult to diagnose.
  • It can be particularly more devastating in the African-American population.
  • If passed by Congress, the Scleroderma Research and Awareness Act (H.R. 1429  and S. 1239) will increase vital funding toward research and awareness about the disease.

I want to help increase the awareness of this rare disease so we can work together to improve treatment and find a cure. Please visit www.sclerodermaawareness.org to find out more about this mysterious and disabling disease.

Asya Gough, West Akron

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