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Old 02-28-2012, 01:58 AM   #1
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Question ehlers danlos syndrome questions...

hey...

I have a question... does anyone on these boards have or know someone who has elhlers danlos (sp?) Syndrome? My little sister has it and was wondering what kind of treatment and medications anyone has taken or gone through to ellieviate symptoms and constant pain... she mentioned a place in ohio that specialize and treat this disorder... but is there anywheres close to new york state?

Any advice, resouces... any info will immensely help

ccs
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Old 03-22-2012, 10:54 AM   #2
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Re: ehlers danlos syndrom ques...

hello there!! I was just recently diagnosed with EDS type III and the doctors have me on mobic for the inflammation, tramadol and Vicodin for the pain. Here soon I plan to begin physical therapy, which will help strengthen the muscles around my joints in hopes to provide more support for them, since I also have degenerative joint disease. Physical therapy, pain management, and emotional support are the primary treatments for EDS. I am currently looking into johns Hopkins connective tissue disease department, but the wait is 4-6 months. Its ironic that I found this post, since I too am here searching for information. It is so difficult to find anything on this awful, awful disease. I know I couldn't offer much, since I too have so many questions, but I do hope I was able to help. Good Luck and God bless!!

 
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Old 05-03-2013, 07:46 PM   #3
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Re: ehlers danlos syndrom ques...

My daughter and I both have EDS. We use to live in Ohio and go to Cincinnati Children's Hospital to see Dr. Tinkle, one of the leading researchers for EDS. He is now in Chicago, IL. There is a Dr. Henderson in Baltimore, MD. Go to inspire.com there is a board just for EDSers. The only real management is for pain and joint damage and to learn your limitations. My daughter has POTS as well and she controls hers with diet. I have mild POTS only with orthostasis intolerance. Hope this helps!

 
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