The Bicuspid Aortic Foundation

One of the really great web sites for people with bicuspid valve disease is the website of the Bicuspid Aortic Foundation:

http://www.bicuspidfoundation.com/Index.html

There is a ton of great information here, including a page full of stories of survivors and tributes to those who did not make it. Last night I read the story of one young man who died in his 30s, leaving a wife who was pregnant at the time. He had a bicuspid valve and died of a ruptured aneurysm. It's a heartbreaking story but it's a testament to how insidious BAV disease is and how important it is to get screened if you have others in your family known to have bicuspid valves, or if you or other close family members have experienced unexplained chest pain.

The aorta is prone to dilation in people with bicuspud valves, and the the danger is that it can rupture, or "dissect," which means the layers can come apart and fill with blood. The Foundation is doing a great job trying to get the word out about this not well known and not completely understood disease. I went to another website yesterday, the Adult Congenital Heart Disease site, and I was surprised that they don't even list BAV as a separate congenital defect! I wrote them about this, and their president acknowledged that they probably need to address the problem.