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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May is EDS Awareness Month
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I challenge everyone to go to www.ednf.org (the Ehlers-Danlos National Foundation) and sign in so that you can download your own free copies of both the Sports Poster and the General Awareness Brochure. Please then take a copy of both of these (as well as the Educator's Guide if relevant) to your local Community Center(s), Gym(s) and/or schools (for the nurse, principal and the P.E. teachers). These materials help people with EDS to be more easily recognizable to the people who are more likely to notice the physical issues that we w/EDS suffer through daily. Your efforts may help someone to not have to suffer with undiagnosed EDS as long as so many of us did before we received our diagnosis.
Best wishes to everyone! And, Happy EDS Awareness Month to us all! Mags Posted on 05/02/08, 03:05 pm |
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Thanks Mags! You're so right about the early diagnosis thing. I have only been diagnosed for a little over a year, heck all through school it was just sort of "cool" to be so flexible, now (along with other medical issues), the EDS seems to be at the core of a lot of those medical issues, especially my spine! I will go check out the site and help get the info out there! 
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