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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selmaSJan 28, 2011
1
My Son was diagnosed with EDS 3 years ago...many trials and tribulations.Does anyone on here have a cystic lung and EDS?
afriend06Jan 26, 2011
selmaSNov 08, 2010
ramgirl77Nov 08, 2010
selmaSSep 08, 2010
Proudmomma3xSep 08, 2010
6
I have type 3 Ehlers Danlos Syndrome. My son has Chiari 1 Malformation and EDS. When his dx was discovered I thought ...
selmaSJan 25, 2011
87gaelgradJan 25, 2011
streetdogDec 03, 2010
irishgirl1980Dec 03, 2010
selmaSNov 08, 2010
5
Hi. New to the forum. Have had physiatrist and P.T. tell me for years that I have hypermobile joints (I've known my...
Hi,
My daughter has been diagnosed with Ehlers Danlos (she and I were both diagnosed as hypermobility type, but I th...
Hi wondering if neone had this and if so can u describe the pain u had and where the pain originated?
I recently l...
Hey I recently was dx with having EDS the hypermobility type... I've had random joint pains since I was a young kid.....
3
Is there anyone with Pots and EDS and what sort of symptoms do you get?
3
Figured out what it was on my own and a geneticist at St. Louis University confirmed it ad the type(s) based on exam ...
selmaSJul 22, 2010
1
REcently beed diagnosed with pots syndrome and suggested it may be due to EDS. I am currently in so much pain reall b...
4
After my son suffered a spontaneous pneumothorax (deflated lung) while at college his doctor there did some prelimina...
selmaSJul 15, 2010
1
I just came to share my good news - I brought my 3 year old daughter to Schneider's Children's Hospital and had her e...
3
I'm not sure if this is appropriate for an open forum but I'll try and keep it as PG as possible.
I have EDS (III) ...
I have 3 daughters, age 1, 3 and 7. They have recently been assessed by a genetics team and they have confirmed that...
I was wondering how long u all are aware of ur EDS dx?
Mine was dx'd a yr ago in March and since it was secondary ...
Hi...since there r only 4 of us...I am not using the poll feature....just wondering what form of EDS u have and how r...
Anyone with eds have this problem? Took my two year old to the cardiologist & was told she has an enlarged aortic roo...
14
They associated EDS with OCD....neone out there feel u have OCD as well??
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