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 130) questions
NEWEST
ACTIVE
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...
Dicon | Last answer
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 ...
CaliforniaSkin | Last answer
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...
Rylanesmom | Last answer
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?
Rylanesmom | Last answer
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 ...
flutegirl449 | Last answer
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 (...
Kwstar1 | Last answer
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
selmaS | Last answer
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,...
Kwstar1 | Last answer
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...
meggmichelle | Last answer
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
selmaS | 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...
intagliogirl | Last answer
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...
jenniferk86 | Last answer
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...
bledpub | Last answer
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...
faloola | Last answer
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 ...
tmitten | Last answer
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...
nsalem656 | Last answer
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 ...
geebug | Last answer
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...
Shortcanuck | Last answer
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
CB1122 | Last answer
Avatar_universal
Hi there, I'm not sure yet if I have EDS or not, but I'm having a hard time finding support forums and places on the internet where I can talk to other people with EDS. However I'm very glad that I found this support forum. My skin bruis...
mysteryhealthcase | Last answer
A
A
Recent Activity
620923_tn?1452919248
Blank
selmaS commented on gjjl's status
Feb 04
620923_tn?1452919248
Blank
selmaS commented on flutterbye1888's status
Feb 03
620923_tn?1452919248
Blank
selmaS commented on photo
Jan 31