Ehlers-Danlos Syndrome User 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
142 members
142 members
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stretchybettyNov 05, 2012
selmaSSep 21, 2012
MissyPrissyNov 07, 2011
selmaSNov 05, 2011
enzymeloverNov 05, 2011
5
Hi all here is a link to several videos by a Dr that has EDS and shares info on this condition.
I hope these help...
By selmaS May 09, 2013
What can we do to bring more awareness to this invisible condition?
Ne ideas?
8
By xsxtdm Apr 07, 2013
Hi all,
I am a 23 yr old female, I have been struggling with GERD for about 6 years... Lots of meds, but the sympt...
selmaSMar 21
1
By Rylanesmom Mar 20, 2013
I saw the orthopedic surgeon today and YAY no cast for now. First we did XRAYS mostly standing (that was a first) whi...
selmaSMar 20
1
By Rylanesmom Mar 20, 2013
My teen daughter was at a friends walking and looking at her phone and ran into the wall fracturing her radius. Her ...
By selmaS Jan 30, 2013
those with type 3 EDS (vascular) should not be given plavix as treatment.
Has neone else heard about this? Please ...
Bella62190Jan 29
selmaSJan 28
2
By Bella62190 Jan 28, 2013
Hello-
Does anyone else with EDS/Marfan have a Social Anxiety disorder? I dropped out of college because i am having...
By Trisha222 Jan 14, 2013
Hi there,
I am a 27 yo mom of two and I was diagnosed with EDS recently and it was so nice to finally unders...
SpokaneRoseJan 14
RylanesmomDec 08, 2012
selmaSNov 16, 2012
Belle95765Nov 15, 2012
Belle95765Nov 15, 2012
6
I have Hypermobilty Syndrome (9/9) and several other issues that let my doctor believe I might have EDS. He ordered a...
selmaSJan 08
1
By soccero Jan 07, 2013
https://sphotos-a.xx.fbcdn.net/hphotos-ash4/206059_4052871846335_479882940_n.jpg
selmaSDec 17, 2012
Bella62190Dec 15, 2012
selmaSDec 14, 2012
Bella62190Dec 13, 2012
Bella62190Dec 13, 2012
10
By Bella62190 Dec 11, 2012
Hi, i am 22 years old and have recently been diagnosed with EDS. i have always had aches and pains, stomach aches, an...
selmaSDec 12, 2012
RylanesmomDec 11, 2012
selmaSDec 11, 2012
RylanesmomDec 09, 2012
RylanesmomDec 08, 2012
5
By Rylanesmom Dec 08, 2012
I am farsighted and my eyes are very different. 2.5 prescription on right and .5 on the left. No matter what they do...
4
Hi.
have always suffered aches and pain, but only last week, at the grand age of 42 i was diagnosed by the geneticis...
RylanesmomDec 08, 2012
selmaSDec 07, 2012
2
By Rylanesmom Dec 07, 2012
I am posting on here so that my information may be of help to others. My DD 14 years old was recently diagnosed with...
25
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...
3
Hi all, just wondering how a doctor differentiates between hypermobility and EDS?
I was diagnosed several years ag...
selmaSNov 06, 2012
RylanesmomNov 04, 2012
2
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...
selmaSOct 26, 2012
RylanesmomOct 25, 2012
selmaSOct 25, 2012
RylanesmomOct 24, 2012
RylanesmomOct 16, 2012
6
My daughter was diagnosed with cranial instability and we get to see the spine Dr at the Children's Hospital next wee...
4
The New York Times reported on this disturbing account of deaths from this energy drink also citing a 14 yr olds heal...
7
Hmmm.... Just another I did not know that was EDS. I was doing some more reading about EDS because in my NL appointm...
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