WishYouWereHere-63

How rare actually is the condition in percentage terms ?

I personally know 4 people with EDS and I wouldn't call my circle of friends very large.

It's a tough one.

I was born with a form of Muscular Dystrophy. The most common type is Duchenne which affects 1 in 3,500 males world wide and it's very severe. Those born with it are usually unable to walk by their teens and rarely survive much into their 20's.

The type of Muscular Dystrophy I have is still officially undiagnosed but is very similar in symptoms to Bethlem Myopathy which, like EDS, is a collagen problem and affects 1 in about 130,000 of either sex.

Online support is a problem because if you go to a Muscular Dystrophy group it's understandably populated by people (or their parents) who have one of the more common types which bear little relation to mine and groups focussing on Bethlem are rare because not many people have it.

Is this the same for the different types of EDS ?

That's very interesting because of the 4 people I know who have it, only one of them is male. Is it more common in women or is it evenly split ?

No none of them are related and certainly none are self diagnosed. They are often in slings and bandages due to dislocations and 2 of them always wear supports and braces.

One of them plays in a brass band I play in but has been unable to so far this year as a shoulder dislocation has left her unable to support her instrument.

I must admit that I got the impression from u/Dogwiththreetails that they were dismissing at least some of the 4 I know with the condition as fake which I thought was very off for someone who claims to be a doctor.