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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
162 members
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selmaSMar 12, 2012
1
By jonnykino Blank
So my skin is quite stretchy. Most noticeable on my face/neck. I don't bruise easily, I don't have any joint pain, I ...
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selmaSFeb 22, 2012
1
By nsalem656 Blank
Selma showed me the link to this page from the Chiari forum. I'm not a hundred percent sure I have eds. I do know tha...
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selmaSJan 30, 2012
michelle669Jan 30, 2012
selmaSJan 27, 2012
3
By michelle669 Blank
I am a mid 30's mother of a 6 year old boy and after a very long life of ignorant doctors and hospitals, I have been ...
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selmaSJan 25, 2012
1
By jane_pain Blank
Hi after never hearing of my HMS condition, i decided to research and see if there was a book that could inform me mo...
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jane_painJan 24, 2012
suzsibsJan 21, 2012
jane_painJan 15, 2012
selmaSJan 10, 2012
jane_painJan 10, 2012
8
By jane_pain Blank
Hi there, Just before Christmas i was diagnosed with hypermobility syndrome, and after 13 years of looking for ans...
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jane_painJan 24, 2012
suzsibsJan 21, 2012
selmaSJan 16, 2012
3
By jane_pain Blank
Hi there, I have HMS and have been newly diagnosed, now i know what i have i am trying to help myself as much as p...
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jane_painJan 15, 2012
kittykat19891Aug 26, 2010
selmaSAug 25, 2010
kittykat19891Aug 24, 2010
springeedingeeAug 05, 2010
7
By pain101679 Blank
I am 15 and my mom refuses to belive there is something wrong with me, but my doctor says i may have Ehlers Danlos al...
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jane_painJan 15, 2012
MissyPrissyNov 14, 2011
selmaSNov 11, 2011
3
By Sexybare Blank
Was wondering if some of ya'll could give me some info. How were you diagnosed and what are different symptoms? Im ju...
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RylanesmomJan 09, 2012
selmaSJan 09, 2012
2
By Rylanesmom Blank
I meet with my EDS Dr tomorrow:)
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selmaSJan 08, 2012
1
By jane_pain Blank
Hi there, I have been newly dignosed with HMS after 13 years! I am 25 and i am thinking about starting a family in...
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enzymeloverJan 01, 2012
selmaSDec 31, 2011
2
By suzsibs Blank
Just wanted to wish you all the best for 2012. Suz
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selmaSDec 22, 2011
1
By selmaS Blank
http://www.medhelp.org/health_pages/Neurological-Disorders/-What-is-Ehlers-Danlos-Syndrome-EDS/show/730?cid=186 Pl...
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selmaSDec 14, 2011
RylanesmomDec 13, 2011
selmaSDec 13, 2011
RylanesmomDec 13, 2011
RylanesmomDec 07, 2011
6
By Rylanesmom Blank
Selma is there a list of Drs for EDS?
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MissyPrissyNov 14, 2011
selmaSNov 09, 2011
MissyPrissyNov 08, 2011
selmaSOct 25, 2011
suzsibsOct 25, 2011
9
By selmaS Blank
Hi All... what type of joint pains do u have... .how long does it last... d...
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MissyPrissyNov 06, 2011
MissyPrissyNov 06, 2011
selmaSSep 27, 2011
suzsibsSep 27, 2011
selmaSSep 26, 2011
9
By suzsibs Blank
I've just found out I have joint hypermobility. What tests should I have to find out which type I have? So far I've d...
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selmaSOct 25, 2011
1
By suzsibs Blank
I was at the rheumatologist yesterday and I wasn't referred to a specialist for tests, the hospital I was at used to ...
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selmaSOct 19, 2011
trisha84Oct 19, 2011
selmaSOct 19, 2011
3
By trisha84 Blank
I had a few questions about swelling. I have no been diagnosed by a dr for EDS but my mother was and well I am 100% s...
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suzsibsOct 14, 2011
selmaSOct 13, 2011
2
By liveformygirls Blank
I have been sick since September 10th. It started off with a sinus flu type sickness which eventually turned respira...
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selmaSOct 11, 2011
1
By blondeballerina07 Blank
The other day I was sitting watching cirque de sol with my friends and they were all fascinated by the contortionists...
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selmaSOct 02, 2011
1
By suzsibs Blank
Hi Well the good news is my doctor has referred me to see a rheumatologist re: JOINT HYPERMOBILITY SYNDROME at the l...
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