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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
165 members
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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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selmaSSep 29, 2011
suzsibsSep 28, 2011
ChicagoDude617Sep 28, 2011
selmaSSep 16, 2011
ChicagoDude617Sep 15, 2011
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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...
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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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selmaSAug 16, 2011
vidalouiseAug 16, 2011
selmaSAug 15, 2011
vidalouiseAug 14, 2011
selmaSAug 14, 2011
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By vidalouise Blank
I am diagnosed with MS and hypermobility syndrome, and working on an official EDS diagnosis. I recently had an MS fl...
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selmaSAug 15, 2011
1
By LeaderK9Ace Blank
Can you get a service dog for ehlers danlos hypermobility type. My joins have been coming out about more the 20 times...
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socceroJul 07, 2011
selmaSJul 05, 2011
2
By Strange_Girl Blank
Is it safe to get a tattoo if you have EDS? I already have problems with scarring and slow healing but will it cause ...
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By sbm697 Blank
Hello - I am new to this community. I belong to the Chiari community where I have met some great people and found...
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selmaSJun 21, 2011
1
By lydelia Blank
OK, here is a little hx. I was dx'ed with Chiari Malformation Type 1 in the past few months and have had some tests a...
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By selmaS Blank
MedHelp is pleased to announce the opening of our new Physical Therapy Forum. Questions in this new forum will be an...
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selmaSMay 18, 2011
1
By CB1122 Blank
So I have EDS (Mostly likely type 3 but could also have classical) I am also 28 weeks pregnant. I am moving fro...
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selmaSMay 12, 2011
E1bowMay 11, 2011
selmaSMay 10, 2011
3
By E1bow Blank
Hi, I have never posted, but I have found many of the information on your group page helpful. I have not been di...
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selmaSMay 03, 2011
JoyHartMay 03, 2011
selmaSMay 02, 2011
JoyHartApr 30, 2011
selmaSApr 30, 2011
5
By JoyHart Blank
My mother was told 12 years ago she had Ehlers Danlos. The doctor said he could tell by "the shape of her ears." Sinc...
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selmaSApr 12, 2011
proteaApr 10, 2011
selmaSApr 08, 2011
3
By protea Blank
I have suffered most of my life with joint and muscle pain.I also had my ankle fused when I was 19yrs old.I was event...
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selmaSMar 06, 2011
1
By camfam05 Blank
My Niece has been diagnosed when she was a teenager and now as a 21 Year Old nurse she seems to have more issues with...
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mmeigh01Mar 03, 2011
cowfdJul 15, 2010
sofa weightMay 18, 2010
cowfdJan 27, 2010
selmaSNov 17, 2009
5
By guferuss Blank
anyone ever been turned down for life insurance because of your eds? i have a mild form and never had any issues gett...
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selmaSMar 01, 2011
1
By BeeR70 Blank
Hi, At 40 I have finally got the EDS diagnosis that I have been waving under there noses in print form for past five ...
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selmaSFeb 06, 2011
1
By selmaS Blank
Hi all please keep sugibear's DD in ur thoughts and prayers...this is a 6 yr old little girl with many health issues ...
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selmaSJan 28, 2011
1
By blessed2BtheirMom Blank
My Son was diagnosed with EDS 3 years ago...many trials and tribulations.Does anyone on here have a cystic lung and EDS?
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afriend06Jan 26, 2011
selmaSNov 08, 2010
ramgirl77Nov 08, 2010
selmaSSep 08, 2010
Proudmomma3xSep 08, 2010
6
By Proudmomma3x Blank
I have type 3 Ehlers Danlos Syndrome. My son has Chiari 1 Malformation and EDS. When his dx was discovered I thought ...
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