my heart goes out to you. I do not know alot but my sisterinlaw's daughter was Dx with this about nine years ago. The mom has done alot of research and is in the throes of a sudden progression in the disease. They live in the Kansas City area. The daughter is now 22. She was able to attend college and has been accepted in a graduate program but with the recent occurences she may not be able to do that. She went to college out of state and is the most self determined young person I have ever known. If you send me your email address I will ask her if she will converse with you. I just know that right now they are very busy trying to find help with recent heart problems developing....I wish you the best that it can be.