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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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1168938_tn?1327157832
Hi Well the good news is my doctor has referred me to see a rheumatologist re: JOINT HYPERMOBILITY SYNDROME at the local hospital. The bad new is the specialist there has just retired so the rheumy will have to refer me to a different h...
suzsibs | Last answer
Avatar_universal
I am not really close to anyone is my family, so I have no idea if I have family history of EDS. But vascular EDS is the most severe form of EDS and I am scared I have it. I am hypermobile, although it i'm not crazy hypermobile. ...
ChicagoDude617 | Last answer
1347273_tn?1317630738
I have just been diagnosed with Ehlers Danlos Syndrome Type 3 on Monday at the Genetics Clinic though kind of new I had it as I am now friends with someone who has it as well. What kind of medications do people take for the pain as I alw...
irishgirl1980 | Last answer
1127960_tn?1264563492
what types of accommedations have any of you with EDS, hypermobility type found most helpful? i'm 16, and in 10th grade: i use the elevator because i can no long make stairs. my arthritis in my hands makes work&notes very hard. my kn...
1748105_tn?1314476806
I am diagnosed with MS and hypermobility syndrome, and working on an official EDS diagnosis. I recently had an MS flare that is affecting my walking. I have been using forearm crutches to get around, but they are definitely causing prob...
vidalouise | Last answer
1670571_tn?1303709640
Can you get a service dog for ehlers danlos hypermobility type. My joins have been coming out about more the 20 times a day even fingers,wrist, elbow, sholder, jaw, lower back, hip, knee, and somtimes neck. I dont have any bracing becau...
LeaderK9Ace | Last answer
Avatar_universal
Is it safe to get a tattoo if you have EDS? I already have problems with scarring and slow healing but will it cause major problems for me?
Strange_Girl | Last answer
Avatar_universal
Hello - I am new to this community. I belong to the Chiari community where I have met some great people and found some very helpful information. My adult daughter has been diagnosed with both Chiari and more recently with EDS. ...
sbm697 | Last answer
Avatar_universal
OK, here is a little hx. I was dx'ed with Chiari Malformation Type 1 in the past few months and have had some tests anstuff to go with it. In that process, I began researching Chiari and noticed that there were quite a few things associa...
lydelia | Last answer
620923_tn?1452919248
MedHelp is pleased to announce the opening of our new Physical Therapy Forum. Questions in this new forum will be answered by John Gallucci Jr., MS, ATC, PT, DPT. John is the Founder & CEO of JAG Physical Therapy, one of the premier ph...
selmaS | Posted
1340519_tn?1305170302
So I have EDS (Mostly likely type 3 but could also have classical) I am also 28 weeks pregnant. I am moving from PA to Chicago/Northern IN in 2 days and I have yet to find a Dr!! I would like to find a high risk Dr and if possib...
CB1122 | Last answer
Avatar_universal
Hi, I have never posted, but I have found many of the information on your group page helpful. I have not been diagnosed Ehler-Danlos Syndrome officially, but both my GP and Rheumatologist believe that I have it (ruled out lupus & rh...
E1bow | Last answer
Avatar_universal
My mother was told 12 years ago she had Ehlers Danlos. The doctor said he could tell by "the shape of her ears." Since then she has had "heart episodes" which they could never actually call heart attacks. She had ignored the doctor who d...
JoyHart | Last answer
999780_tn?1263675571
I have suffered most of my life with joint and muscle pain.I also had my ankle fused when I was 19yrs old.I was eventually dx with Fibro a year ago and have been on lyrica ever since.I have had to have a hyst as I had severe endo.I had 7...
protea | Last answer
Avatar_universal
My Niece has been diagnosed when she was a teenager and now as a 21 Year Old nurse she seems to have more issues with separated joints. She is in Seattle by I have a coouple of quesitons. I see posts of different levels?stages? She ...
camfam05 | Last answer
Avatar_universal
anyone ever been turned down for life insurance because of your eds? i have a mild form and never had any issues getting insured before. recently tried to update and tweak my coverage and every one i try refuses to write me due to the ed...
guferuss | Last answer
Avatar_universal
Hi, At 40 I have finally got the EDS diagnosis that I have been waving under there noses in print form for past five years, been seeing doctors since I was born for various signs and symptoms. I'm sure this is no shock to any of you, but...
BeeR70 | Last answer
620923_tn?1452919248
Hi all please keep sugibear's DD in ur thoughts and prayers...this is a 6 yr old little girl with many health issues due to EDS. Please let ue DD know we r sending good vibes~~~~ and prayers to her, u and all in charge of her care. ...
selmaS | Last answer
1577831_tn?1296216078
My Son was diagnosed with EDS 3 years ago...many trials and tribulations.Does anyone on here have a cystic lung and EDS?
blessed2BtheirMom | Last answer
Avatar_universal
I have type 3 Ehlers Danlos Syndrome. My son has Chiari 1 Malformation and EDS. When his dx was discovered I thought for sure that I had chiari as well. I have most of the same symptoms that he does. I have had an experienced neurosurgeo...
Proudmomma3x | Last answer
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