Hey Lizelle,
We are very aware of the support group you mentioned, my wife and kids are regulars in that group pretty much daily but thank you very much for taking the time to look them up. You would be surprised to know how many people affected with EDS are on feeding tubes because of the "stomach attacks" associated with it. Our boy who has EDS nearly lives on pizza because it is nearly the only food that doesn't trigger a stomach attack with him.
Blondie was scheduled today for a meeting with a new cardiaoligist but it had to be cancelled due to weather conditions and power outages. Hopefully they can reschedule very soon.
Thanks for the prayers,
Sult