In the UK geneticists here say there is no such thing as benign joint hypermobilty syndrome its ehler-danlos syndrome class 3. They seem very keen to get rid of the BJHS label. They believe there is nothing benign about it as many sufferers have lots of pain.

We are lucky here as EDS has been getting a lot of press lately and there seems to be a little more awareness of it. Saying that it is rare - probably undiagnosed if I get diagnosed my sister, father and mother will also get a diagnosis - figures are 1 in 10,000. But obviously it is a mainly x chromosome inherited disorder, so I would expect at least one parent to get the diagnosis!

I just wanted to ask Rogue Puppet do you have problems with local anesthetic's? Mine wear off really quickly or don't take at all. Can make dental surgery an adventure and having part of my toe nail removed was agony. The Dr told me to stop jumping around but I could feel the scalpel he told me I was imagining it! Apparently thats very common.

I also have the problem that my scars go very wide and the actual tissue of the scar looks tissue paper thin.

The forum I told you about is pretty good and there are quite a few people from the states on there. If you can get hold of the EDS booklets they do - I think you can download them - they are a revelation! All the symptoms I have that should have been picked up on years ago!

Good luck

Rach