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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
164 members
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selmaSApr 19, 2014
Ball123Apr 19, 2014
selmaSApr 19, 2014
Ball123Apr 19, 2014
stretchybettyNov 05, 2012
9
By selmaS Blank
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...
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selmaS29 minutes
selmaSJul 31
3
By LegExtension
Hi everyone! I have been recently diagnosed with EDS type III. The search for a diagnosis took more than 20 years, bu...
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selmaSJun 29
selmaSJun 15
3
By TrumpetKat
I do not have EDS, I apologize right now for any ignorance.The mother of a very close friend of mine however has the ...
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selmaSJun 07
1
By Srgryclown
Highly suspicious about having VEDS, is the "translucent skin", bruise easily and a clubbed foot at birth typically a...
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selmaSJun 02
1
By Jemmak333
Hi everyone, I was just wondering if I could have abit of help and advice please? :) I'm a 16 year old girl and I thi...
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selmaSOct 03, 2014
1
By selmaS Blank
Hi the Driscoll the theory has been proven...so it is no longer a theory.... See more links to this info in the E...
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By selmaS Blank
The link below is a talk with Dr Claire Francamano.....very interesting ~~~ http://www.youtube.com/watch?v=vesuF_8...
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By selmaS Blank
Copy and paste this link and read the story,Tim Tebow surprises girls with EDS.... http://www.aol.com/article/...
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RylanesmomAug 26, 2014
bean418Aug 19, 2014
selmaSApr 23, 2014
3
By Rylanesmom Blank
I thought this might help someone so I wanted to share. I have known that I needed silver ring splints for a long tim...
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selmaSJul 08, 2014
1
By bean418 Blank
Does anyone with EDS have Ptygerium. Ptygerium is a horizontal line of tissue that runs across the eyeball. Let's s...
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selmaSJun 01, 2014
1
By TracyTollett Blank
You probably get this a lot. My physical therapist mentioned connective tissue disease so I looked it up and was very...
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selmaSApr 15, 2014
Migz88Apr 15, 2014
selmaSMar 19, 2014
enzymeloverMar 16, 2014
4
By MadiBogden Blank
Do I Have Ehlers Danlos Syndrome? MY symptoms include: my fingers have that swan neck look to, and they become very h...
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selmaSApr 15, 2014
1
By gtamom Blank
ds1 (oldest) ds2 (youngest ) DS1 has EDS Hypermobility with Classic overtures, he also has Scheuermann's Disease...
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RylanesmomMar 23, 2014
Valerie824Mar 12, 2014
selmaSDec 12, 2012
RylanesmomDec 11, 2012
selmaSDec 11, 2012
7
By Rylanesmom Blank
I am farsighted and my eyes are very different. 2.5 prescription on right and .5 on the left. No matter what they do...
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By selmaS Blank
Are u aware what cause John Ritter's death can be associated with having EDS or other connective tissue disorders? ...
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selmaSAug 25, 2013
selmaSAug 25, 2013
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By sunnydays29 Blank
I have a teen daughter diagnosed by pediatric ortho and doctoral physical therapist to have JHS. It's not the simple...
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selmaSAug 25, 2013
1
By Jojo_Chey Blank
I was diagnosed with Ehlers Dan Los Syndrome  a bit over 2 years ago. It causes reacuring dislocations. Mostly in my ...
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selmaSAug 02, 2013
enzymeloverAug 01, 2013
selmaSAug 01, 2013
3
By GoodnightMoon Blank
So I guess I'll start with the fact that we have family history that I only found out about now after my child bro...
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selmaSJul 15, 2013
skheavnerJul 15, 2013
selmaSJul 14, 2013
3
By skheavner Blank
Hello. I am a 25 year old female with a large Chiari Malformation that was operated on in 2009. I recently was also d...
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selmaSMay 29, 2013
SexybareMay 28, 2013
selmaSMay 28, 2013
3
By Sexybare Blank
Hi, I'm 33. My dxs are eds, chiari, autonomic dysdunction, raynauds, basilar invagination, possible lupus, etc.... I ...
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