kat
Hi! We thought our daughter had it last year and I spent every spare moment researching on the web. I was able to hook up with some people who have the disease and they were a wealth of information---from doctors to advice to calm my hysterical nerves. I don't know where you are located, but if you email me I will check and see if I still have their emails and have them get it touch with you. We are in NC, but I know that they can steer you in the right direction no matter where you live. There is an Ehlers Danlos Foundation. Good luck and my thoughts and prayers are with you!