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Ehlers-Danlos Syndrome

5 replies

TheFillyjonk · 23/08/2012 12:21

Never heard of this before yesterday, when I was out for a drink with a guy who has this, and I think I may have it too. I have very stretchy skin (I always assumed everyone did!) and I can pull out at least an inch of skin from my elbows, the backs of my hands, face and neck as typical of the symptoms. I also bruise very, very easily. I've got very hypermobile joints - I can shake hands with myself behind my back and rest my palms flat on the floor with both knees fully extended, and I can pop my hips and shoulder blades. I have the typical flat feet and hypermobile kneecaps which move around. Really, I had no idea that EDS existed and I thought I was just a bit bendy!

I want to see my GP about it because I understand there a type of EDS that affects your organs. Does anybody here have, or know anybody who has EDS? How did you go about getting a diagnosis?

OP posts:
moosemama · 23/08/2012 17:03

Hi there

There is an online EDS support group here which has lots of information on it.

There is also a long-running thread in Special Needs: Children about EDS. It's primarily about our dcs but quite a few of the parents have EDS as well and would be able to answer any questions you may have.

TheFillyjonk · 23/08/2012 17:15

Brilliant, thanks for that.

OP posts:
moosemama · 23/08/2012 17:20

No problem. Smile

CFSKate · 23/08/2012 17:23

There may be some information in this thread
www.mumsnet.com/Talk/_chat/1539513-I-cant-do-this-anymore-No-hope-left?pg=1

iscream · 29/08/2012 03:47

Both my sons were diagnosed with it today. Sure sounds like you have it. You usually are referred by a doctor like a rhuematologist, or possibly a dermatologist, to a genetic doctor, who will be the one to diagnosis it. www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf
Good luck.

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