Ehlers-Danlos Syndrome, Marfan Syndrome, Loey-dietz Syndrome : Genetic Connective Tissue Disorders

I've osteogenesis imperfecta and i've the mildest version (type 1) so some of the people doesn't it take it so seriously although i'm in pain or aching all the time...

I have EDS3 too, diagnosed in Dec. 2009. My Mum also has it, to a lesser degree than me. It's great to find other 'Zebras'. I rely on crutches when out & about (I only ever go out for i.e. Dentist appointments etc..). My right shoulder is my main problem, dislocated the most (I gave up counting at 15). My knees have definatley been buggered since birth (I'm 37). I'm currently going through the claim for PIP at the moment :/

Hey guys, I have EDS hypermobility as well! I just had surgery for my Chiari malformation which went really well, I'm so glad to be headache-free! My left side is the worst - shoulders and hips out all the time. Feel free to PM me, as a Listener I'd love to chat with anyone about coping techniques/getting through college/getting workplace accommodations. I'm really glad to find a community of people here dealing with the same thing. I'm sure we all have horror stories about how doctors have disregarded our issues for years and how invisible our illness can be to others. Best of luck coping with this syndrome, it's definitely a lot to handle!

I am a listener here and I have Ehlers-Danlos Syndrome (HM type), dysautonomia (hyperadrenergic POTS), Mast Cell Activation Disorder, and chronic fatigue. Such a fun list!

I have HEDS too.

I have read much on EDS, I haven't been diagnosed, but according to the test with points it's possible, waiting to find a Dr. Most dr. Here don't take EDS seriously, so waiting, I have Alot of the smptom

Ah! Fellow Zebras! I'm always excited when I find a new 'herd'.

Would anyone mind sharing their treatment plan for HEDS with me? My doctors and I keep going back and forth because the only option they are giving me for treatment is exercise and with my fatigue that just isn't possible. I would love to give them other ideas that have worked for other people.

@gatheringroses42

I have EDS, which has caused Postural Orthostatic Tachycardia Syndrome. It also causes me pain and makes me very tired.

i have marfan syndrome. i inherited it from my mother.

@gatheringroses42 no body has been able to figure out what's wrong with me but eds is most likely. My mom was diagnosed but our current doctor isn't sure because "it's a rare thing to have" but other than that I'm just suffering quietly trying not to let people see me cry