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Ehlers-Danlos Syndrome 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.
1 - 20 (of 132) questions
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 answer some questio...
Good Morning, I was diagnosed with Chiari Malformation in 2008 , Decompressed in 2012! I moved to ID recently to escape the long ha...
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 like me to carry out ...
Hi everyone! I have been recently diagnosed with EDS type III. The search for a diagnosis took more than 20 years, but finally I was able...
I do not have EDS, I apologize right now for any ignorance.The mother of a very close friend of mine however has the hypermobility type a...
Highly suspicious about having VEDS, is the "translucent skin", bruise easily and a clubbed foot at birth typically a hallmark of VEDS? B...
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 think I may have hyperm...
Hi the Driscoll the theory has been proven...so it is no longer a theory.... See more links to this info in the Ehlers-Danlos group p...
The link below is a talk with Dr Claire Francamano.....very interesting ~~~ http://www.youtube.com/watch?v=vesuF_8_KZs
Copy and paste this link and read the story,Tim Tebow surprises girls with EDS.... http://www.aol.com/article/2014/08/27/former-nf...
I thought this might help someone so I wanted to share. I have known that I needed silver ring splints for a long time but couldn't find ...
Does anyone with EDS have Ptygerium. Ptygerium is a horizontal line of tissue that runs across the eyeball. Let's say rt corner to corn...
You probably get this a lot. My physical therapist mentioned connective tissue disease so I looked it up and was very surprised that this...
Do I Have Ehlers Danlos Syndrome? MY symptoms include: my fingers have that swan neck look to, and they become very hyper extended whenev...
ds1 (oldest) ds2 (youngest ) DS1 has EDS Hypermobility with Classic overtures, he also has Scheuermann's Disease & very mild Spina B...
I am farsighted and my eyes are very different. 2.5 prescription on right and .5 on the left. No matter what they do they can never make...
Are u aware what cause John Ritter's death can be associated with having EDS or other connective tissue disorders? http://www.thedocto...
I have a teen daughter diagnosed by pediatric ortho and doctoral physical therapist to have JHS. It's not the simple variety as she has ...
I was diagnosed with Ehlers Dan Los Syndrome  a bit over 2 years ago. It causes reacuring dislocations. Mostly in my right hip and knee. ...
So I guess I'll start with the fact that we have family history that I only found out about now after my child broke her 2nd bone in 5...
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