Cheryl
EDS is hereditary. I have it so does my sister (my brother does not). My 3 daughters have it, my mother, grandmother, & great grandmother as well. My great grandmother was in a wheel chair most of her adult life. The doctors said it was "crippling arthritis". It isn't easy to find doctors who know about EDS. I have even asked our pediatrician to "brush up on it and do a little research" so she could better meet the needs of my children. My oldest daughter (16) just had pectoral repair surgery. Everything went fine, but it was important to let every member or the surgical team know about her having EDS. This way they were aware and ready should a problem arise. I know it is upsetting to find out that your children have this. However, it is better to know when they are young so you can educate them and help them manage this syndrome. I wasn't diagnosed until I was 33. Several doctors I had gone to made me feel like a kook or a worry-wart. Some even treated the symptoms but never put it all together. Good luck to you and your family. Cheryl