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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
156 members
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620923_tn?1405964489
selmaSApr 19
Ball123Apr 19
selmaSApr 19
Ball123Apr 19
stretchybettyNov 05, 2012
9
By selmaS Blank
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...
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selmaSJul 08
1
By bean418
Does anyone with EDS have Ptygerium. Ptygerium is a horizontal line of tissue that runs across the eyeball. Let's s...
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selmaSJun 01
1
By TracyTollett
You probably get this a lot. My physical therapist mentioned connective tissue disease so I looked it up and was very...
1903798_tn?1333908888
selmaSApr 23
1
By Rylanesmom
I thought this might help someone so I wanted to share. I have known that I needed silver ring splints for a long tim...
7748835_tn?1393872268
selmaSApr 15
Migz88Apr 15
selmaSMar 19
4
By MadiBogden
Do I Have Ehlers Danlos Syndrome? MY symptoms include: my fingers have that swan neck look to, and they become very h...
8255382_tn?1397295871
selmaSApr 15
1
By gtamom
ds1 (oldest) ds2 (youngest ) DS1 has EDS Hypermobility with Classic overtures, he also has Scheuermann's Disease...
1903798_tn?1333908888
selmaSDec 12, 2012
RylanesmomDec 11, 2012
selmaSDec 11, 2012
7
By Rylanesmom Blank
I am farsighted and my eyes are very different. 2.5 prescription on right and .5 on the left. No matter what they do...
620923_tn?1405964489
By selmaS Blank
Hi the Driscoll the theory has been proven...so it is no longer a theory.... See more links to this info in the E...
620923_tn?1405964489
By selmaS Blank
Are u aware what cause John Ritter's death can be associated with having EDS or other connective tissue disorders? ...
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selmaSAug 25, 2013
selmaSAug 25, 2013
2
By sunnydays29 Blank
I have a teen daughter diagnosed by pediatric ortho and doctoral physical therapist to have JHS. It's not the simple...
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selmaSAug 25, 2013
1
By Jojo_Chey Blank
I was diagnosed with Ehlers Dan Los Syndrome  a bit over 2 years ago. It causes reacuring dislocations. Mostly in my ...
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selmaSAug 02, 2013
enzymeloverAug 01, 2013
selmaSAug 01, 2013
3
By GoodnightMoon Blank
So I guess I'll start with the fact that we have family history that I only found out about now after my child bro...
1544075_tn?1296030098
selmaSJul 15, 2013
skheavnerJul 15, 2013
selmaSJul 14, 2013
3
By skheavner Blank
Hello. I am a 25 year old female with a large Chiari Malformation that was operated on in 2009. I recently was also d...
1823499_tn?1370093889
selmaSMay 29, 2013
SexybareMay 28, 2013
selmaSMay 28, 2013
3
By Sexybare Blank
Hi, I'm 33. My dxs are eds, chiari, autonomic dysdunction, raynauds, basilar invagination, possible lupus, etc.... I ...
620923_tn?1405964489
By selmaS Blank
What can we do to bring more awareness to this invisible condition? Ne ideas?
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selmaSApr 15, 2013
xsxtdmApr 15, 2013
xsxtdmApr 15, 2013
selmaSApr 14, 2013
enzymeloverApr 14, 2013
8
By xsxtdm Blank
Hi all, I am a 23 yr old female, I have been struggling with GERD for about 6 years... Lots of meds, but the sympt...
1903798_tn?1333908888
selmaSMar 21, 2013
1
By Rylanesmom Blank
I saw the orthopedic surgeon today and YAY no cast for now. First we did XRAYS mostly standing (that was a first) whi...
1903798_tn?1333908888
selmaSMar 20, 2013
1
By Rylanesmom Blank
My teen daughter was at a friends walking and looking at her phone and ran into the wall fracturing her radius. Her ...
620923_tn?1405964489
By selmaS Blank
those with type 3 EDS (vascular) should not be given plavix as treatment. Has neone else heard about this? Please ...
4481194_tn?1355338138
Bella62190Jan 29, 2013
selmaSJan 28, 2013
2
By Bella62190 Blank
Hello- Does anyone else with EDS/Marfan have a Social Anxiety disorder? I dropped out of college because i am having...
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soccero, and selmaS commented on soccero's status
Jul 27
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soccero I wish this pain would stop... Comment
Jul 26
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