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Ehlers-Danlos Syndrome User Group
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
156 members
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620923_tn?1405964489
RylanesmomSep 12, 2012
1
By selmaS Blank
U should be taking this list to ur eye Dr to make sure u have had a complete exam. https://www.evernote.com/shard/...
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RylanesmomSep 12, 2012
Kwstar1Sep 11, 2012
enzymeloverSep 08, 2012
3
By Kwstar1 Blank
hey everyone, I am sure many of you can relate to what I'm feeling but sometimes i just feel so alone. I feel like s...
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selmaSSep 10, 2012
1
By meggmichelle Blank
My son has recently been diagnosed with Elhers-Danlos hypermobility type. I have so many questions especially since w...
620923_tn?1405964489
By selmaS Blank
We all have questions regarding EDS and could I have it here is a link to a check list of all the types of things to...
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selmaSAug 22, 2012
1
By intagliogirl Blank
Hi i'm new. I have a long list of problems including Ehler-Danlos and have 17 doctors and have read thousands of page...
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selmaSJul 26, 2012
jenniferk86Jul 26, 2012
selmaSJul 26, 2012
3
By jenniferk86 Blank
I now know that I fit the criteria for EDS, I scored a 5 on the beightons scale and I have had joint and muscular pai...
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selmaSJul 26, 2012
jenniferk86Jul 25, 2012
RylanesmomApr 13, 2012
selmaSApr 02, 2012
4
By bledpub Blank
Just recently diagnosed and still waiting to get in to see the rheumatologist. It's going to be a few weeks. In the m...
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selmaSJul 08, 2012
1
By faloola Blank
Hi, I've been wondering if EDS patients could have plastic surgery. I'm sorry if this is a stupid question. I just f...
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selmaSJul 04, 2012
1
By tmitten Blank
Last year I had both my knees replaced and they both failed due to stretched tendons. I then went to Mayo Clinic and...
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selmaSJul 02, 2012
1
By nsalem656 Blank
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...
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geebugJun 20, 2012
selmaSJun 19, 2012
geebugJun 19, 2012
selmaSJun 19, 2012
geebugJun 19, 2012
6
By geebug Blank
The more I read, the more I think I might have EDS. I've always been rather flexible. I think I score about a 7 on ...
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selmaSJun 14, 2012
1
By Shortcanuck Blank
Hi - I suspect I may have EDS hypermobility syndrome but the rheumatologist dismissed me completely - kept saying I d...
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selmaSMay 18, 2012
1
By CB1122 Blank
This is more for support of others with EDS and/or other rare diseases... created for May since its EDS awareness mon...
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selmaSMay 18, 2012
enzymeloverMay 18, 2012
enzymeloverMay 18, 2012
3
By mysteryhealthcase Blank
Hi there, I'm not sure yet if I have EDS or not, but I'm having a hard time finding support forums and places on the ...
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selmaSMar 21, 2012
1
By seamatty Blank
Ok I need some clarification...it seems from what I read online there ultimately isn't much difference between Hyper ...
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selmaSMar 12, 2012
1
By jonnykino Blank
So my skin is quite stretchy. Most noticeable on my face/neck. I don't bruise easily, I don't have any joint pain, I ...
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selmaSFeb 22, 2012
1
By nsalem656 Blank
Selma showed me the link to this page from the Chiari forum. I'm not a hundred percent sure I have eds. I do know tha...
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selmaSJan 30, 2012
michelle669Jan 30, 2012
selmaSJan 27, 2012
3
By michelle669 Blank
I am a mid 30's mother of a 6 year old boy and after a very long life of ignorant doctors and hospitals, I have been ...
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selmaSJan 25, 2012
1
By jane_pain Blank
Hi after never hearing of my HMS condition, i decided to research and see if there was a book that could inform me mo...
1427565_tn?1327433809
jane_painJan 24, 2012
suzsibsJan 21, 2012
jane_painJan 15, 2012
selmaSJan 10, 2012
jane_painJan 10, 2012
8
By jane_pain Blank
Hi there, Just before Christmas i was diagnosed with hypermobility syndrome, and after 13 years of looking for ans...
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