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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Hi-I have a 16 year old son with possible EDS (he also has chronic fatigue, fibromyalgia and orthostatic intolerance among other things) Both his knees sublux and we are currently working with a physical therapist who understands this. I would like any names of doctors in the Baltimore/DC area who specialize in diagnosing EDS, particulary in teenagers. Things seem to be getting worse (sprains etc...) so I am aggressively seaking answers! I already know of Dr. Levy at Hopkins, but the office seems confrontational. I don't have a great pediatrician so I'm on my own until we find a new one. Thanks so much. Any ideas, similar stories, etc...would be helpful. Thanks-Karensky
Posted on 06/26/08, 01:06 pm |
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Hey karen,
I am a 20 year old male from San Diego, CA. I completely understand the struggle your son has been enduring and shall come to endure. I will start first by saying that you are in a very good location (so i hear) in order to receive help for EDS, There is a huge study in Baltimore that i have been corresponding with the main DR. and will help pay for transportation and board for both you and your son. They are in need of more males for the test group (not sure if there is req. age or not tho). NIH i believe is the organization conducting it. However it would be best to head straight towards getting a Geneticist and the official diagnosis, as that is what i am doing tomorrow. I know Mags on this support site is much more knowing on the specifics...also joining EDNF.org can be a great resource as well (despite the poorly designed and difficulty navigated menus. I would also guess that the chronic fatigue and fibro...may just be mistaken and EDS could be the main proponent (all my doctors have told me i had those as well). I used to play football in high school, now i have been confined mostly to my bed these last couple years, due to doctors misdiagnosis and unwillingness to prescribe the correct medications for my condition. Ha well, i will stop there, because perhaps i am getting off track but i will finish by saying it has been a long time coming, but things have finally fallen into place, at least just a little. If you would like to talk me feel free to message me or post again! 
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Hi there, 3 of my step kids have EDS. We r in London, England so I can't recommend anyone for Batimore but I hope you find someone who specialises in this soon. XsparkyX
PS. Baltimore is in my favorite movie of all time - Sleepless in Seatle!
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