Advocates on Steps of Congress 2013
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Living with Scleroderma

Life changing disease. Having knowledgeable Dr. make a World of difference.

Living with Scleroderma

I was diagnosed in the early 90's & only knew about Raynaud's. Dr. told me NOT to read about Scleroderma on the internet. My wife did!! Wow life was scary!!! We joined Scleroderma Foundation in 2004, began to get more information & went to 1 support group. That was scarier than my life!! Seeing others in advanced stages of Scleroderma. I am a Cancer survivor so all the different episodes I was having in my health I attributed to the Radiation treatments I had in 1984. I spent many days in the hospital through the nineties & the 2000's having my stomach pumped because I could not keep food down & completely emptying my stomach & not eating & building up to food was the way I lived for 10+ years. I ended up in 2007 with a stage 4 ulcer on my buttock & could not sit for 7 months. After many surgeries & finally finding a Johns Hopkins Plastic Surgeon that took on my case & I found the Scleroderma Center & Dr. Wigley. Just having him give me a physical & talk about changing medicines made my world a better place. My life isn't easy & I've had to make adjustments in my life. I've still not tried to bowl again (I was a 190+ bowler), but I go to classic car shows & we had 2 car shows to raise money & awareness for Scleroderma. I also golf & my wife runs the support group nearby. We have some lumps but, we try to smash them down!!!

 

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