What does everyone else know about Ehlers Danlos Syndrome

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I was recently diagnosed with Ehlers Danlos Syndrome (EDS) what do all of you know about it?

Never heard of it before.

I have done some research on Ehlers-Danlos Syndrome before. For some reason, it is commonly commorbid (more than the general population at least) in people with autism, the hypothesis being that a specific gene mutation/deletion in a certain area may be responsible for both syndromes. Did they specify what type you have? I want to become a doctor one day, and while some doctors only want to see horses, if I become a doctor I promise I will never forget the zebras . Good luck with your new diagnosis!

Here is my favorite video/documentary I have seen on EDS before; it really brings awareness to how people can struggle for years without it ever being addressed: https://m.youtube.com/watch?v=ZfCb3U5pmqU

The extent of how EDS manifests in people is massive—like autism itself. One could be so mildly affected that it’s barelt noticeable. Another person could have life-threatening symptoms.

I don’t happen to have it.

If I don't have it, whatever autism phenotype I may be seems pretty close.

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I know EDS is linked to POTS, MCAS and gastroparesis. It is a connective tissue disorder with numerous subtypes not just hypermobility. Apparently it is extremely painful and it mainly affects females.

Interesting. I’d heard a bit about it and just did some reading about it. Twenty odd years ago I was diagnosed with fibromyalgia which causes constant pain. When I was young I was more hyper mobile. (The pictures in Wikipedia of the finger mobility I used to be able to do and to cross all fingers together at once. Toes too.) i was born with a dislocated hip and constantly had sprained wrists and ankles. Definitely am going to do more research. Thanks for sharing.

My flatmate may have EDS with hypermobility. I say may because although she's been to her GP about it, she had to be referred to a specialist. That was over a year ago. The public system is very slow here. She has pain mainly in her legs and hands. She loves playing video games so hand pain makes her upset.

My brother is close to having it my sister thinks she has it though i'm not sure if she still think she does. My dad has it. Ehlers danlos is characterized by extra flexibility and that causes pain. I have a little bit of hyper extension kin my left elbow. But i am less flexible than most people so i don't have eds. I have some of the symptoms tho. I'm suprised to see this come up considering eds is pretty rare. Idk that much about it. tho i've not really done any research. It's a lot like arthiritis. I'm familiar with joint pain. I actually haid rsi in my shoulder a month or two months ago. My dad has the join pain kind. He was diagnosed with multiple types of arthirites. It also runs in the family. My dad has it all over his body. My dad says being overweight can make it worse. It's a rare disorder so i'm suprised it has came up.

How did you break your hip, Pieplup? I've been curious for ages but never found the answer. You're pretty young for such an injury, which must have been very painful.