Riekie Posted April 7, 2012 Report Share Posted April 7, 2012 I really need some advice from someone with EDS or with a child with EDS. Specifically related to joint popping / preventative treatments & supplements and if you are in Sydney - a good Physio & Ortho with solid experience in EDS. If you prefer, you could PM me - thanks! Link to comment Share on other sites More sharing options...
janetd1 Posted April 7, 2012 Report Share Posted April 7, 2012 Hi Riekie I have a daughter with eds,she has got the hyper as well as the vascular if you would like to get in contact with me I am in Cherrybrook so pm me and I can tell you more she is 23 now and has battled with it since the age of 14 Link to comment Share on other sites More sharing options...
Riekie Posted April 7, 2012 Author Report Share Posted April 7, 2012 Thanks so much! I sent you a PM Link to comment Share on other sites More sharing options...
miraclebabycaw Posted April 10, 2012 Report Share Posted April 10, 2012 I've never been officially diagnosed, but am pretty sure I have it. I have had 2 knee operations for dislocating knee caps in my early twenties, and now have osteo arthritis in the knees as a result. My joints have always been very "lax". I'm also pretty sure my daughter might have inherited a form as well as she also seems to have very "weak" ligaments and joints and has since she was a baby. I was told you need to see a Rheumatologist as well.Good luck Link to comment Share on other sites More sharing options...
janetd1 Posted April 10, 2012 Report Share Posted April 10, 2012 You should have had genetic testing done , I know my daughter and I have it I am only mildly affected but my daughter is quite bad. 5 days ago we were at hospital having some joints put back in ,yesterday morning we were back again she is so sub-lax that even her jaw sublaxes. there are eight things to look for to know for sure weither it is Karin meets all of them Hopefully your daughter does not have it. not much support for it heregoodluck Link to comment Share on other sites More sharing options...
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