Hi sweetie! I have Marfan, too. I a\have all the symptoms. Pretty classic. I had 2 kids. One with, and one without Marfan. I dissected at 4.4 aortic measurement, surgery for 12 hours, but I made it! This is 12 years later! My son with Marfan died at age 27. I love and miss him, so much. I’ve had almost 20 eye surgeries, but still see! Life is a huge gift! Live every day to the max! Thanks for helping spread awareness. It’s huge! Live large!

Your attitude is very encouraging! I hope you are still hanging in there ❤️

Its been taking a toll on my body. Far as being weak and aching all the time. It hurts my pride knowing I can't be the man I use to be. Really like your video.

Hey ! You haven’t posted anything since this video. How are you doing ?

Hi, my Name is Michaela, I am 45 and have Marfan too. I live in Munich/ Germany with my family. I dont jave found any good specialist, only many onterested docs my whole life. Maybe you would write me to share our experoance about beeing a not normal "Marfan-patient". It would be göad to hear from you! All the best & kind regards.

I had mine repaired 11 years ago. Been doing fine since. Far as my legs go. They've been going done hill.

Tan eik fai l am 21 years malaysia loph👌😚✨😃😘👶🎉

Very pretty and bubbly girl :) i think i might have marfans and i'm getting an echocardiogram conducted next week

Hope everything goes well.

How tall are u? I'm a 7 footer.

My mom passed at 39 with the same thing as ur dad.😢😢😢 3months later I found out that I had it.

My sister had the hole in her heart. She had surgery at 5. Then steel rods in her back when she was 11.

I know that I out grew my lungs when I was 12 yrs old.