Aa
A
A
Close

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.

41 - 60 (of 131) questions
NEWEST
ACTIVE
1903798 tn?1333908888
The children's hospital was good today! They were very thorough and even knew what EDS was:) They even commented on her loose kneecaps. They do suspect cranial instability for Ry. They sent her for neck and complete spine X-rays. Th...
  Posted
Avatar universal
I need your advice.......I really think that my daughter (7 yo) might have some chiari sx going on along with possibly hypermobility and tethered cord sx. None of it really started with her either until after the chiropractor got his han...
  Posted
Avatar universal
Hello! I've been diagnosed with EDS for a few years now... I was wondering does anyone know if its possible for people with our condition to get facial fillers? (Restylane, Juvederm, collagen, botox, or Retin- A creams?) The reason I ...
  Posted
1903798 tn?1333908888
Yesterday went to the Dr and... Olecranin bursitis and trochanteric bursitis (hips) Retrocalcaneal bursitis heels Costochondritis ribs Last night went to football game with kids and when they do the stomping on the bleachers I th...
  Posted
1903798 tn?1333908888
EDS
My DD was diagnosed with EDS today... Did you know that hyper mobility type has a 50% chance of being passed on?
  Posted
Avatar universal
I know Ehlers-Danlos is genetic, but is it possible to have hyper-mobility type without family history of it? Most of my family members on my Dad's side have benign joint hyper-mobility syndrome, but mine's always been a lot more severe ...
  Posted
3109210 tn?1342664082
I am 19 yrs old and looking into EDS type 3 (hyper mobile type) as my neurologist suggested to get checked out for it because Of my severe scoliosis and joint pain. The symptoms all match up pretty well except I don't get dislocations (...
  Posted
620923 tn?1452919248
U should be taking this list to ur eye Dr to make sure u have had a complete exam. https://www.evernote.com/shard/s200/sh/cf2b0028-8f18-4d88-ab6f-e68c264c8e94/49dcc2243a2938e79a55749c13c81400
  Posted
3109210 tn?1342664082
hey everyone, I am sure many of you can relate to what I'm feeling but sometimes i just feel so alone. I feel like searching for answers to my pain is useless, and that at some point I should just give up and try to live as best as can,...
  Posted
Avatar universal
My son has recently been diagnosed with Elhers-Danlos hypermobility type. I have so many questions especially since we are expecting another baby in Feb. His symptoms started when he started crawling around 6 months old. He would cry. Pa...
  Posted
620923 tn?1452919248
We all have questions regarding EDS and could I have it here is a link to a check list of all the types of things to consider...I hope this is helpful. http://www.ednf.org/documents/EDSinPracticeS.pdf
  Posted
Avatar universal
Hi i'm new. I have a long list of problems including Ehler-Danlos and have 17 doctors and have read thousands of pages of medical text. What else can you do when you're disabled!? Anyway a few thoughts. It can be passed along in familie...
  Posted
1448748 tn?1312959808
I now know that I fit the criteria for EDS, I scored a 5 on the beightons scale and I have had joint and muscular pain for 3 or more months, that is how I was diagnosed by my rheumatologist... but that rhematologist cannot test for the v...
  Posted
700067 tn?1332992883
Just recently diagnosed and still waiting to get in to see the rheumatologist. It's going to be a few weeks. In the meantime, I am going to see my PCP tomorrow. What can I do about pain control? The pain in my hips is the worst and makes...
  Posted
Avatar universal
Hi, I've been wondering if EDS patients could have plastic surgery. I'm sorry if this is a stupid question. I just feel incredibly self conscious about all of my scars and would like to maybe get surgery to cover them up or something. A...
  Posted
Avatar universal
Last year I had both my knees replaced and they both failed due to stretched tendons. I then went to Mayo Clinic and had them both repaired. I am currently having physical therapy but my therapist is not knowledgeable about EDS. I am ...
  Posted
Avatar universal
My neurosurgeon said I don't have EDS because I couldn't bend my hand all the way to my arm. It's not possible for my right hand because I lost rom due to kienbock's but even if I could I still am a 4 on the testing score. Why is he sayi...
  Posted
2192667 tn?1338321405
The more I read, the more I think I might have EDS. I've always been rather flexible. I think I score about a 7 on the beighton scale. I've had joint pain my whole life. I was in and out of the ER frequently as a child with sprained ...
  Posted
Avatar universal
Hi - I suspect I may have EDS hypermobility syndrome but the rheumatologist dismissed me completely - kept saying I didnt have it but could not tell me why. I had done some research from the NIH and felt this could be me. It was a physio...
  Posted
1340519 tn?1305170302
This is more for support of others with EDS and/or other rare diseases... created for May since its EDS awareness month Called: Face of a Zebra http://youtu.be/9jHJxHnR-yA
  Posted
A
A
Recent Activity
620923 tn?1452919248
Blank
selmaS commented on The_Marine_Corp_Brat's status
Apr 27
620923 tn?1452919248
Blank
selmaS commented on gjjl's status
Apr 04
620923 tn?1452919248
Blank
selmaS commented on gjjl's status
Mar 31