What is Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary fro...
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Its not a well known syndrome or defect,
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Reply #13 - 06/12/09 10:10am
I have been dealing with this since I first fell in 1979 and my knee went out on me, 9th grade and my first week in high school. Every summer vacation I went in for surgery because I tore something and i t had to be repaired. Well im now a helathy 45 yr old woman and something like 18 surgeries later Im still dealing with this. 8 on my knee with a total knee replacement. jst had #7 on my shoulder June 1, rotator cuff repair labrium reattachement, tighening up the loosness amd scrapping the arthritis. Ive ha 2 on my elbow due to ligament detachment, and Ive had a c-4, c-5 fussion on my neck. I cant twll you how much pain I have been in the last30 years, but there is nothing I can di but to go on, I do take pain meds when the pain gets real bad. The thing that really hurts me the most is the poeple who dont know about this syndrome. Family members always saying " Cant the Doctors get it right yet" or "Surgery again...Is that all you do is have surgery?"... All I want is people to understand this is very realy and very painful and there is no cure.I live in Tampa Florida and its so hard to find Doctors who know about this and who care about you besides HMO's.. Talk about Depression..My own husband gets frustrated with me. thinking Im needing attention... I really could use something more than attention let me tell you! so all you out there who have been suffering ...I know what you are going through and maybe even more. Posted on 06/12/09, 10:06 am |
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