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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
157 members
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1427565_tn?1327433809
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...
1427565_tn?1327433809
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...
1427565_tn?1327433809
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...
1903798_tn?1333908888
RylanesmomJan 09, 2012
selmaSJan 09, 2012
2
By Rylanesmom Blank
I meet with my EDS Dr tomorrow:)
1427565_tn?1327433809
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...
1168938_tn?1327157832
enzymeloverJan 01, 2012
selmaSDec 31, 2011
2
By suzsibs Blank
Just wanted to wish you all the best for 2012. Suz
620923_tn?1405964489
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...
1903798_tn?1333908888
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?
620923_tn?1405964489
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...
1168938_tn?1327157832
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...
1168938_tn?1327157832
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...
1168938_tn?1327157832
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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selmaSSep 29, 2011
suzsibsSep 28, 2011
ChicagoDude617Sep 28, 2011
selmaSSep 16, 2011
ChicagoDude617Sep 15, 2011
7
By ChicagoDude617 Blank
I am not really close to anyone is my family, so I have no idea if I have family history of EDS. But vascular EDS...
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selmaSSep 12, 2011
irishgirl1980Sep 08, 2011
selmaSAug 14, 2011
irishgirl1980Aug 12, 2011
selmaSMar 22, 2011
19
By irishgirl1980 Blank
I have just been diagnosed with Ehlers Danlos Syndrome Type 3 on Monday at the Genetics Clinic though kind of new I h...
1127960_tn?1264563492
sanukiladyAug 25, 2011
mmeigh01Mar 03, 2011
halbashesJan 14, 2010
4
By ContradistinguishingSymptomaticKat Blank
what types of accommedations have any of you with EDS, hypermobility type found most helpful? i'm 16, and in 10th gr...
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