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Ehlers-Danlos Syndrome 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.
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1823499 tn?1370093889
Hi, I'm 33. My dxs are eds, chiari, autonomic dysdunction, raynauds, basilar invagination, possible lupus, etc.... I am curious if anyone...
3 answers |
620923 tn?1452919248
What can we do to bring more awareness to this invisible condition? Ne ideas?
Avatar universal
Hi all, I am a 23 yr old female, I have been struggling with GERD for about 6 years... Lots of meds, but the symptoms never seem to go...
8 answers |
1903798 tn?1333908888
I saw the orthopedic surgeon today and YAY no cast for now. First we did XRAYS mostly standing (that was a first) which made me feel like...
1 answer |
1903798 tn?1333908888
My teen daughter was at a friends walking and looking at her phone and ran into the wall fracturing her radius. Her wrist was in an odd ...
1 answer |
620923 tn?1452919248
those with type 3 EDS (vascular) should not be given plavix as treatment. Has neone else heard about this? Please check into this med ...
4481194 tn?1355338138
Hello- Does anyone else with EDS/Marfan have a Social Anxiety disorder? I dropped out of college because i am having such a hard time wi...
2 answers |
Avatar universal
Hi there, I am a 27 yo mom of two and I was diagnosed with EDS recently and it was so nice to finally understand why I was physi...
11 answers |
Avatar universal
I have Hypermobilty Syndrome (9/9) and several other issues that let my doctor believe I might have EDS. He ordered a cardiology referral...
6 answers |
979826 tn?1389039958
https://sphotos-a.xx.fbcdn.net/hphotos-ash4/206059_4052871846335_479882940_n.jpg
1 answer |
4481194 tn?1355338138
EDS
Hi, i am 22 years old and have recently been diagnosed with EDS. i have always had aches and pains, stomach aches, and head aches. i am i...
10 answers |
4353362 tn?1353268935
Hi. have always suffered aches and pain, but only last week, at the grand age of 42 i was diagnosed by the geneticist with EDS. just aft...
4 answers |
1903798 tn?1333908888
I am posting on here so that my information may be of help to others. My DD 14 years old was recently diagnosed with EDS type 3. I have...
2 answers |
1903798 tn?1333908888
I just went to see my rheum Dr. I haven't seen him since January and it was preop for Chiari Surgery. Really I left the appointment fee...
25 answers |
Avatar universal
Hi all, just wondering how a doctor differentiates between hypermobility and EDS? I was diagnosed several years ago with hypermobility...
3 answers |
1823499 tn?1370093889
my nl is pretty sure that i have eds type 3. im seeing a rheumatologist this mon and if he confirms it than i will be refrerred to a gene...
2 answers |
1903798 tn?1333908888
My daughter was diagnosed with cranial instability and we get to see the spine Dr at the Children's Hospital next week. She is no longer...
6 answers |
620923 tn?1452919248
The New York Times reported on this disturbing account of deaths from this energy drink also citing a 14 yr olds health may have had som...
4 answers |
1903798 tn?1333908888
Hmmm.... Just another I did not know that was EDS. I was doing some more reading about EDS because in my NL appointment I was made aware...
7 answers |
1903798 tn?1333908888
Well my research led me to think maybe epsom salt would help.... I don't think it does yet I think I should be a mermaid. I can feel al...
1 answer |
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