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Ehlers-Danlos Syndrome User Group
I'm confused
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
155 members
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I'm confused

My neurosurgeon said I don't have EDS because I couldn't bend my hand all the way to my arm. It's not possible for my right hand because I lost rom due to kienbock's but even if I could I still am a 4 on the testing score. Why is he saying I don't have it at all.
1 Comment
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620923_tn?1404844667

  First of all u do not have to have flexible joints to have EDS there r several types and u can have a 2 on that score and have it...

Do see a rheumatoid Dr for an eval they r the Drs that specialize in this area Not the NS.

  Get the right Dr to do the testing a NL or a rheumatoid dr.
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