Glad that there is some awareness starting. You don't know how much I would like to start fresh in a new town, and have everyone just know that I am disabled, instead of people that have seen me out and about for years and think I must be fine. My daughter has a dilated aoric root, so the vascular part of EDS scares the crap outta me. I'm really glad that there are docs with good knowledge in this, though.
@Angie – I am so glad there is too! And, boy, do I understand. Wouldn't that be nice to just start fresh, where everyone doesn't question your every move and whether or not you are disabled, including family and friends….how nice that would be! I am SO sorry to hear about your daughter's aorta. How is it doing these days? How often does she go back to have it checked?