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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
170 members
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620923 tn?1452919248
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...
Avatar f tn
selmaSMar 22
AJ_hamtonMar 22
selmaSMar 18
3
By AJ_hamton
hey guys,i think i got type 1 eds.you see i workout at the gym and love dancing.was wondering if its ok for someone l...
15075305 tn?1438273576
selmaSAug 01, 2015
LegExtensionAug 01, 2015
selmaSJul 31, 2015
3
By LegExtension Blank
Hi everyone! I have been recently diagnosed with EDS type III. The search for a diagnosis took more than 20 years, bu...
Avatar f tn
selmaSJun 29, 2015
TrumpetKatJun 28, 2015
selmaSJun 15, 2015
3
By TrumpetKat Blank
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, 2015
1
By Srgryclown Blank
Highly suspicious about having VEDS, is the "translucent skin", bruise easily and a clubbed foot at birth typically a...
Avatar f tn
selmaSJun 02, 2015
1
By Jemmak333 Blank
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...
620923 tn?1452919248
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...
620923 tn?1452919248
By selmaS Blank
The link below is a talk with Dr Claire Francamano.....very interesting ~~~ http://www.youtube.com/watch?v=vesuF_8...
620923 tn?1452919248
By selmaS Blank
Copy and paste this link and read the story,Tim Tebow surprises girls with EDS.... http://www.aol.com/article/...
1903798 tn?1333908888
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...
7748835 tn?1393872268
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...
8255382 tn?1397295871
selmaSApr 15, 2014
1
By gtamom Blank
ds1 (oldest) ds2 (youngest ) DS1 has EDS Hypermobility with Classic overtures, he also has Scheuermann's Disease...
1903798 tn?1333908888
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...
620923 tn?1452919248
By selmaS Blank
Are u aware what cause John Ritter's death can be associated with having EDS or other connective tissue disorders? ...
5938418 tn?1377027189
selmaSAug 25, 2013
selmaSAug 25, 2013
2
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...
1544075 tn?1296030098
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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