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Ehlers-Danlos Syndrome

Beth

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Maureen - There is no such thing as 'double jointed'. According to all the experts 'we' consulted when when my 14 year old son was only 2yrs and 10 months old, it is truly just loose ligaments. Based on what has been said to me, and based on all the research I have done in medical teaching libraries, people with loose ligaments have a "connective tissue/collagen defect". Connective tissue problems may be related to any number of disorders but the two that come up the most are "Ehlers-Danlos Syndrome" or "Marfan's Syndrome". My son has "E.D.S." with an additional rare manifistation. He is missing his "tibialus anterior...." (sp?) which normally connects the knee to the foot to lift it (on the right in his case). His initial orthopedic doctor had no clue what to do after numerous "club foot castings" and a heel-cord extension did not work. Finally he sent us to the Campbell Clinic in Memphis Tennessee. The Ped. Ortho. Specialist there diagnosed "EDS" and had the on-call geneticist and neurologist look at him separately - giving them no clue ahead of the visit - to see if they too would see the "EDS". They did immediately just by looking at his skin and the way his joints looked. None of the three knew that the other would or did diagnose "EDS" until after they all had completed their evaluation. So - there is no such thing as being double jointed. If you or anyone else would like to 'duscuss' this syndrome personally please e-mail me. Thanks. Beth

 


   
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