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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
153 members
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dumisaniDec 09, 2012
RylanesmomDec 07, 2012
dumisaniNov 21, 2012
selmaSNov 19, 2012
4
By dumisani Blank
Hi. have always suffered aches and pain, but only last week, at the grand age of 42 i was diagnosed by the geneticis...
1903798_tn?1333908888
RylanesmomDec 08, 2012
selmaSDec 07, 2012
2
By Rylanesmom Blank
I am posting on here so that my information may be of help to others. My DD 14 years old was recently diagnosed with...
1903798_tn?1333908888
selmaSNov 11, 2012
RylanesmomNov 10, 2012
selmaSNov 10, 2012
RylanesmomNov 09, 2012
selmaSNov 09, 2012
25
By Rylanesmom Blank
I just went to see my rheum Dr. I haven't seen him since January and it was preop for Chiari Surgery. Really I left...
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selmaSNov 06, 2012
stretchybettyNov 05, 2012
selmaSOct 26, 2012
3
By stretchybetty Blank
Hi all, just wondering how a doctor differentiates between hypermobility and EDS? I was diagnosed several years ag...
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selmaSNov 06, 2012
RylanesmomNov 04, 2012
2
By Sexybare Blank
my nl is pretty sure that i have eds type 3. im seeing a rheumatologist this mon and if he confirms it than i will be...
1903798_tn?1333908888
selmaSOct 26, 2012
RylanesmomOct 25, 2012
selmaSOct 25, 2012
RylanesmomOct 24, 2012
RylanesmomOct 16, 2012
6
By Rylanesmom Blank
My daughter was diagnosed with cranial instability and we get to see the spine Dr at the Children's Hospital next wee...
620923_tn?1393294254
selmaSOct 25, 2012
RylanesmomOct 24, 2012
selmaSOct 24, 2012
RylanesmomOct 24, 2012
4
By selmaS Blank
The New York Times reported on this disturbing account of deaths from this energy drink also citing a 14 yr olds heal...
1903798_tn?1333908888
selmaSOct 24, 2012
RylanesmomOct 24, 2012
selmaSOct 23, 2012
RylanesmomOct 22, 2012
selmaSOct 22, 2012
7
By Rylanesmom Blank
Hmmm.... Just another I did not know that was EDS. I was doing some more reading about EDS because in my NL appointm...
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...
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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?1393294254
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...
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