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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
171 members
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1903798 tn?1333908888
selmaSOct 24, 2012
1
By Rylanesmom Blank
Well my research led me to think maybe epsom salt would help.... I don't think it does yet I think I should be a mer...
1903798 tn?1333908888
selmaSOct 22, 2012
RylanesmomOct 21, 2012
selmaSOct 21, 2012
RylanesmomOct 17, 2012
selmaSOct 17, 2012
8
By Rylanesmom Blank
The children's hospital was good today! They were very thorough and even knew what EDS was:) They even commented on...
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selmaSOct 16, 2012
1
By Dicon Blank
I need your advice.......I really think that my daughter (7 yo) might have some chiari sx going on along with possibl...
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selmaSOct 04, 2012
CaliforniaSkinOct 02, 2012
selmaSSep 30, 2012
3
By CaliforniaSkin Blank
Hello! I've been diagnosed with EDS for a few years now... I was wondering does anyone know if its possible for pe...
1903798 tn?1333908888
selmaSSep 19, 2012
RylanesmomSep 18, 2012
selmaSSep 17, 2012
RylanesmomSep 16, 2012
selmaSSep 16, 2012
7
By Rylanesmom Blank
Yesterday went to the Dr and... Olecranin bursitis and trochanteric bursitis (hips) Retrocalcaneal bursitis heels ...
1903798 tn?1333908888
selmaSSep 19, 2012
RylanesmomSep 17, 2012
selmaSSep 17, 2012
RylanesmomSep 16, 2012
selmaSSep 16, 2012
11
EDS
By Rylanesmom Blank
My DD was diagnosed with EDS today... Did you know that hyper mobility type has a 50% chance of being passed on?
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RylanesmomSep 12, 2012
selmaSJul 26, 2012
jenniferk86Jul 25, 2012
selmaSJun 04, 2012
4
By flutegirl449 Blank
I know Ehlers-Danlos is genetic, but is it possible to have hyper-mobility type without family history of it? Most of...
3109210 tn?1342664082
RylanesmomSep 12, 2012
Kwstar1Aug 27, 2012
selmaSAug 27, 2012
3
By Kwstar1 Blank
I am 19 yrs old and looking into EDS type 3 (hyper mobile type) as my neurologist suggested to get checked out for i...
620923 tn?1452919248
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/...
3109210 tn?1342664082
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?1452919248
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...
1448748 tn?1312959808
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...
700067 tn?1332992883
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...
2192667 tn?1338321405
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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