Ehlers Danlos Syndrome

I was just diagnosed with this yesterday.

It’s a somewhat rare (1 in 5,000 to 1 in 10,000) genetic disease that affects collagen production in the body. For me this means lots of joint pain & subluxations, but that’s just one of the forms it takes.

If you’ve never heard of it and are curious to find out more,
is a good place to start.

Anyway, I was wondering if anyone else on this board has it. I’m trying to figure out how it’s going to impact my life. There’s not a ton of info on living with EDS, so it would be helpful to talk to someone who’s dealing with it.

It looks like I have either the Classic or Hypermobility type. From what I’ve read, if you have EDS, those are the better types to have.

One of my friend’s husband has it. Their biggest worry was children as it is a dominant trait and any child of would have a 50-50 chance of having it too. If you found out you had it as an adult, I’d guess your form is mild enough to live with fairly easily. Just don’t go running through any blackberry patches in short sleeved shirts.

FWIW- I’ve treated dogs and horses with E-D syndrome. In both cases they get lots of skin tears because their skin is fragile, but are otherwise OK.