How has the Marfan diagnosis affected your family? 

I also have Marfan Syndrome. I was diagnosed a couple of weeks ago. I’m 24, I have atrial fibrillation and my heart beats too slow. It’s really cool to see people with Marfan syndrome meeting up together. My older brother also has Marfan syndrome and we have most of the same symptoms as each other. God bless you all 🙂

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!

Would love to see a follow up or where are they now video

I sometimes worry about my family. I've fully accepted having Marfan Syndrome, but they are in complete denial about it and often refuse to listen to me talk about it. I feel that it's harder for them to deal with it than it is for me. So, what happens when I need heart surgery, they refuse to even acknowledge it, so how are they gonna handle that?

Hi I also suffer from Marfans I live in the UK I've always wondered if there is any conferences or meet ups for people with, if anyone knows anything about any please let me know. Many thanks

You are a wonderful group. I have marfans and im 66 years old. I had cataract surgery at 33 and also have a 4.6 cm aortic aneurysm. Many joint pains. I've had a longer life than I thought I would. And I also feel bad for passing down to my son.

My oldest was diagnosed after her dad died in his third open heart surgery at 29 from Marfans my Danny and three of my brother in laws all had there mitral valves replaced in 1986 At st joes in Phoenix az. By dr from the Az heart institute all are deceased now ...my nessa who was diagnosed after her dad died in 1986 passed of an overdose in 2013 ..wish now I’d brought all my other girls family to these as they would have understood why somehow better ......

I lost my daughter 3 weeks ago from marfan syndrome