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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 with eds has issues with pain/swelling in shoulderblade and up neck into top of shoulder and down t...
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620923 tn?1452919248
What can we do to bring more awareness to this invisible condition? Ne ideas?
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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 away. I have had test that show inflamed stomach lining and delay gastric emptying, but I still fee...
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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 we were doing something different. A little fun when the xray tech would say turn your feet in/out ...
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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 position that she could not move out of when I picked her up. I am sure due to EDS tendons got stret...
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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 if it is RX'd for u and u have EDS vascular....we have to double check all meds given as many do not...
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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 with it. i guess i am just wondering if the two are related?
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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 physically falling apart. I have had non-reconstructive TMJ surgery and have severe uterine prolapse for ...
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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 and a dermatology referral for skin biopsy. What other tests are there? My doctor never had a patie...
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979826 tn?1389039958
https://sphotos-a.xx.fbcdn.net/hphotos-ash4/206059_4052871846335_479882940_n.jpg
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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 in some sort of pain everyday and it is difficult to do the things i need to do. i also belive i thin...
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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 after a bit more info really, if anyone can help. Have good days, and of course bad days. my knees sli...
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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 EDS and was diagnosed by my NS when I was being seen for pending chiari surgery. He diagnosed me b...
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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 feeling hopeless and thought he was mean. He had said that the chiari surgery would not fix everything...
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Avatar universal
Hi all, just wondering how a doctor differentiates between hypermobility and EDS? I was diagnosed several years ago with hypermobility (7/9 on Beighton scale) but I now have excruciating joint and muscle pain for which I take Lyrica. ...
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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 geneticist. any suggestions for my appt mon on what exactly to say to the rheumatologist? i also have ch...
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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 able to play sports. Then we wait for the geneticist and cardiologist end of November. I will pos...
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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 some impact on her death..... "The type of 24-ounce can of Monster Energy that the Maryland teenage...
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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 that my muscles that hold my eye in place hurt when I move it to the extreme left or right. So of ...
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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 all the body "stress and pain" come back as the water drains. I think I will live in the tub.
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