Ehlers-Danlos Syndrome: Type III
 

I have not been posting on the forum for a while because I have been so busy, but have had a recent diagnosis of Ehlers-Danlos Syndrome.
Does anyone here have it???
~ dance59326

:Wave-Hello: I am undiagnosed as far as a genetic disorder, but might have a connective tissue genetic disorder. I dont know much about ehlers-danlos, other then the symptoms are similar to marfans.

I am 25, and was dx as hf autistic when I was around 6 years old. I have always had speech disorder/communication issues, and also was dx with learning disabilities and some other stuff as a kid.

I have heart valve prolapse and regurgitation, some bad hypermobility and some muscle tone issues, nerve damage in my feet, hands and wrists. Knee and back pain issues that might be related.
Well, thats just a few things, I have a whole lot of issues, I could make a pretty long list.

Despite all that, I am very athletic, am a cyclist and race at the cat1/pro level :D It is my medicine for all my issues (although there is a chance I will have to give up racing if I find out I have something that affects my heart more then was thought :()

Anyway, I have just been learning all about the connective tissue genetic disorders and the possibility that I have something like that. Over the years, I have never been to a doctor who has been able to put everything together yet.

Eds
 

Hi,
I found out that I have this as well. My sister was diagnosed by her Dr after she tore her ACL (it has been torn for 3 years now).

I have had many joint sublexations, headaches, bruising etc and very hypermobile joints. Since we just found out about this, I have been trying to learn about it and have seen personal trainers to help me rehab after injuries so that I don't do further damage.

I am also in the process of having my heart checked, although I just found out that my mom and aunts have murmurs and need observation.

I am always looking for information on this and how to keep from injuring myself further.