Marfan Syndrome

Family testimony

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People & Blogs

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• Marfan
• Syndrome

[frfluffybottom]

I have marfans,I'm 19 and way taller than my brothers,I'm 6ft 4inches and my bro is 5ft 8!!!!!!!!!

but marfans killed my mother and two aunts so I do realise that its serious and that my life expectancy is slightly lower than most peoples.Hence the reason I promised myself to live life and don't be afraid of anything........I cherish everything and love life im not afraid of tryin anything and in a way am grateful to marfans for this.

[amberjohnston1989]

wow, why are u typing on youtube? go to the doctor.

[Skullslammer12345]

I feel your pain. I to also have marfans syndrome which was a mutated gene too for me.

[magicfingers1366]

My eyesight is messed up from detached retinas. I have severe back pain from this. I am 6 foot 7. First the doctor thought I had acromegaly but the heart murmur was a distinct clue to my diagnosis. They said I would never make 40 yet I am 45 so doctors don't know everything.

[TigronCCX]

@groovysherrie65 i wish i looked good. i used to think that i had long, thin arms because i never exercised, but i never knew it was actually Marfan's, so im stuck with having lanky arms. makes me feel wimpy. i do have friends though, so i do have supporters

[futher2k]

I wish we had all this information a long time ago. my brother had marfans, he died in 1997 because an aortic aneurysm...we didn't know 'till after his death that he had marfans. he used to go to the gym and he loved to ride mountain bike....if we only knew maybe he would still be here......

[schon74]

im 36 i have severe marfans so did my mother who died aged 29, i have had aortic valve and route replaced when i was 23 and harrington rod in my back when i was 13,my spine is now severly curved giving me alot of pain. in 2003 o had detatched retina gave me 3 weeks in hospital. on the plus side i have a 11 year old daughter who is fit and healthy and shows no signs of marfs :)

[pacomonkey007]

@BlackValleyRequiem I know I have know I have a long life expectancy and all that sh*t but I don't find that long life worth lving if I can't pursue the goals I want in life. I know I can live a full life, but a happy one, eh maybe

[BlackValleyRequiem]

@pacomonkey007 Jesus Christ man, educate yourself better on your own syndrome. Those with marfans, if treated properly now have roughly the same life expectancy as a normal person, you just have to be careful about the thickness of your blood and not to over exert your heart. Just be diligent in treating it and you can live a full happy life -.-. My boyfriend has a shunt, an artificial heart valve and has had three more major surgeries and hes doing just fine.

[groovysherrie65]

Marfan's or not, he is a very handsome young man! Strikes me a very kind person, too!

[pacomonkey007]

I'm 19 and I got Marfans, it can go to hell. Ruined my chances of going to the military, pursuing a career in the FBI, and chances of going with a lot of girl when I was in school. I'm not gonna lie and I dont mind saying it on the internet, I got a death sentenceand I'm just live life fast and die hard.