Susan
Member
Just to update, I have an appointment with the Marfan/Ehlers Danlos Clinic in Cincinnati in late March. I figure no clinic is going to be close to where I live, so I decided to go there. After reading various EDS websites, not many people have had valve surgery. Those with the Vascular Type have had other heart/aorta problems. Most people with EDS on the sites seem to have chronic joint pain. I'm fortunate that I don't. I'm just falling apart internally. I'm curious as to what the cardiologist and geneticist has to say.
