Advocates on Steps of Congress 2013
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There is Hope

There is Hope
There is Hope

In 1983, at the age of 15, I was diagnosed with localized linear scleroderma. Doctors told my parents to prepare for the fact that I could become crippled or deformed. I am happy to say that in 2011 I finished my first Ironman. I am a lucky one.

In 1983, during track season in high school, I was diagnosed with localized linear scleroderma. There were many doctor visits and a biopsy. My left leg discolored from my hip to the top of my foot. I lost the hair that was in the discolored areas, and my skin was much thinner in those spots as well.

Doctors told my parents to be prepared for the fact that I could become weak, more deformed, and potentially unable to walk as the situation worsened.

Fortunately for me, the scleroderma stopped spreading after several months. It is unclear what caused the progression to stop. I took Plaquenil, and I know that my parents prayed a lot. However, we were never given a solid explanation as to why the condition stopped getting worse.

Eventually hair grew back in most of the areas on my leg. There is still discoloration and thin skin, but I have full use of my leg, hip, and foot.

I have done triathlons, marathons, and an Ironman, which is a 2.4 mile swim, 112 mile bike ride, and 26.2 mile run.

I am telling this story to provide hope for those affected by scleroderma. Medicine does not yet have all the answers, but someday I hope that all those affected by scleroderma will end up with an ending as happy as mine.

God bless.

 

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