Debbie Cousins
Hi, Connie, Sorry to hear about your son (and your daughter, who should be seen by a rheumatologist, as well). Ehlers-Danlos CAN be scary at first, especially when you look for information about it, and can't FIND much. The more you learn, though, the less scary it will be. It is very important to find doctors who have some knowledge of EDS. (NOTE: If you have to spell Ehlers-Danlos for the doctor, consider looking for another doctor!) The most knowledgeable doctors seem to be rheumatologists, geneticists, and anyone who has had a lot of experience treating other patients with Ehlers-Danlos. There are still somet things that even these doctors may not know, though. Write to me at my personal e-mail address (DebMCousin@aol.com), and I will forward to you some articles to get you started on your quest for EDS knowledge. I look forward to hearing from you. Debbie Cousins