My Own ExperienceI have known I have Marfan Syndrome for as long as I can remember. I was diagnosed at 6 years of age. I am 5'10" and have the long extremities. I also have dislocated lenses which makes me legally blind. This doesn't bother me much because with contact lenses I am able to see pretty well and do everything I pretty much want to do.
10 years ago I had an Aortic Dissection and emergency surgery to repair it. It was a very scary experience but thank God I made it through and i am able to live a normal life. I do pretty much everything everyone else does. I have 3 sons. 2 of them have been tested for Marfans and have turned out negative. My 3rd son does not want to be tested and so we don't actually know. We are still trying o convince him to get tested. So far he shows no signs so that is a good thing.
Last week I had my yearly CT Scan and it showed that an aneurysm in my Aorta has grown from 41/2 to 51/2 . I will be speaking to my surgeon on Tuesday. We will be discussing my options.
Needless to say that I am very scared. My first surgery was very frightening. I believe that God has lead me to this page. I found it by accident but I know that there are no accidents in God. I have enjoyed reading all of your stories and I look forward to reading more and to sharing my own experiences with everyone.