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Ehlers-Danlos Syndrome User Group
Tests
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
158 members
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Tests

I was at the rheumatologist yesterday and I wasn't referred to a specialist for tests, the hospital I was at used to have a clinic for EDS but the Professor has now retired, but his team of physio's still work there so I've been referred to them.
Should I have had any tests done to find out what type of EDS I have? I am hypermobile and understand that is the same as EDS type 3.  I am back in 4 months to see rheumy.
Suz
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620923_tn?1416285879


  From what I understand a geneticist does the next set of testing....so, if u r going to see this team of physio's mayb they will do them....??? I would ask them about it since ur Rhuemmy didn't or doesn't seem to know what to do or who to send u to.

    "selma"
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