Ehlers-Danlos Syndrome Support Group

I would pursue it, I have seen so many different Dr's who all agreed I was a mess but really didn't know what to do with me. Finally I was sent to a genetic specialist and she was the one who diagnosed me with eds and my youngest daughter was with me and she also has it, as does my Mom.
Good Luck!

That was how we were diagnosed! I saw the genetacist to rule out Marfan's Syndrome, come to find out I have EDS III Hypermobility, and so do my children, though he was reluctant to put that in writing in case they need insurance of their own in the future, he didn't want them uninsurable. But he did put in their file that I have it and that they display many of the symptoms and that they should be watched. You should pursue it because it has caused many things with me and my family that we now watch carefully. I see a cardiologist and have an ultrasound of my heart every year because I have mital valve prolapse with regurgitation and tachycardia with mild aortic dilation. I have moderate scoliosis that they monitor. The OB makes sure all is secure and no possible problems of prolapse, and I avoid sutures due to widened atrophic scarring. All three of my children are watched for all the above. My youngest has dislocated her elbow more times than I can count, my son his hip, and myself, my shoulder. My middle daughter is the one that displays the least amount of negative symptoms, but she is the most flexible and has the thinest skin out of all of us. Good luck, lylajean

I saw my regular doctor yesterday and mentioned EDS to her. She said she was familiar but would research it more. I went to her for a shoulde injury. thinks I did something to the rotator cuff. I really need to know what type of doctor diagnosis's EDS. If I have it, it really explains alot of my childhood and teenage years. Years of dislocated knees, sprained ankles, painful joints. Many doctors have commented on my hypermobility and my early onset of arthritis but no mention of EDS. I would say my Dad and sister have it also and maybe my children. I have Multiple Sclerosis and have always blamed my clumbsyness on that. so any suggestions on who would be helpful in diagnosis would be appreciated.
Cathy

I would go to your doctor and request to see a genetacist to rule out Ehlers-Danlos Syndrome. That you've done a lot of research and you have reason to believe that you have it. They can't deny you because if something were to happen to you and it were due to Ehlers-Danlos Syndrome and they could have watched for it or done something about it, they would be in big trouble. Document your request, possibly send it to them in writing. After they found out with me, I have to go to the cardiologist and have an ultrasound of my heart every year so they can watch my heart because the Ehlers-Danlos caused my mitral valve prolapse with regurgitation, tachycardia, POTS, and aortic weakening. You need to make them do their job.