My Own Experience

I 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.
Bethsalomon Bethsalomon
41-45, F
2 Responses Feb 3, 2012

I found this site a few days ago also. I had emergency open heart surgery almost 3 yrs ago to repair my aorta. When i was young some doctors would say i had marfans an some would say i didnt because i dont have alot of the symptons i jus had the dislocated lens. Then at age 22 my aorta tore an now they say i have it but they never had testing for it. How did they test your sons? And how was it having children because they really discourage me from having kids because of my aorta and being on blood thinners??

hey I just found this group last night. I too an going for another heart surgery...well I should say another two surgery's I need my mechanical aortic valve repaired and I also need my descending aorta repaired (basically my aorta from the top of my heart to my groin will be prosthetic. I noticed you wear contact lenses I used to wear them too. In 2006 I had intraocular lens implants put into my eyes. Many marfans who have had lens dislocation have had them and they are safe as long as they are fixated to the iris..I have 20/20 vision and I do not need contacts or glasses any more. oh and please keep encouraging your son to get tested it is better to know and be monitored than it is to die from something that could have been treated...assure him that even if he has marfans he may have a mild case with virtually no complications.