Want to find info about Marfan syndrome ...?

my bf has told me he has Marfan syndrome , but wont elaborate much on it mostly out of embarrment it seems .... he is very tall almost 6.6 and has other symptoms ....if any other guys with this syndrome want to talk about this I would be grateful... and what are your biggest fears with having Marfan. Thank you this means alot to me because I heard that life expectancy is short with this along with a host of other scary things to worry about I love him and want to understand ... and just reading Wikipedia is not the same as hearing what real people living with this have to say ...