marfan's syndrome?

Question

I'm 23 and was just diagnosed yesterday

am I in trouble because of being diagnosed so late?

I know what I look like :-p

I am asking if you can die from this, and if I'm at a higher risk of complications being diagnosed so late.

my heart is involved

I really am trying not to worry

but I guess my heart isn't in great shape. my mom is a nurse and she keeps asking to listen and when I ask she'll say nothing but the first time she checked for herself she said it doesn't sound good.

I also smoke. I had no idea my symptoms could have been from my heart. I was told I had anxiety. I'm still not even sure what a palpitation feels like, since I've been "ignoring" a lot of symptoms since I was an early teen. my heart does race a lot though, I can see it beat through my chest.

thanks to everyone for the info

Answer 1

Many people are diagnosed at much older than you, my mother was diagnosed when she was 28.
I know you have heard it before QUIT SMOKING! That is one of the worst things you can do to your heart.
I would like to discuss this with you farther. I am the "owner" of a Marfan support group on Yahoo called Marfan Connection and am heavily involved with another support group as well. Many of our members are about your age. So please contact me, we can give you a lot of information and support and even a shoulder to cry on when you need it!

Answer 2

It used to be that folks with Marfan's lived, on average, about 2/3rds as long as folks without Marfan's. Now that we have earlier detection of Marfan's and have various treatments for the cardiac complications of Marfan's, folks with the disorder live just about as long as everyone else.

Depending on how severe the illness is in you and depending on what organs are involved, you may need regular screening tests. You may also require regular doses of a beta blocker medication to reduce the stress on the aorta. Think of it like living with high blood pressure - it's a lifelong condition that requires patient education and regular management but if it's done properly, you can expect to have a happy, healthy life.

I wouldn't worry about the fact that it was diagnosed at age 23 - I can't think of any reason why this would increase your risk of dying early.

Answer 3

no .. my sister just got diagnosed as well ... and shes 19.. a little different , but still .... it takes allot of adjusting ,,, esp, if you are an athletic person , and you enjoy running .. but it is manageable ,.... it is mainly shown by the lengthening of bones in the face and limbs, but if you had it your whole life, which most people have, you will not see a difference because to you it is just how your bones took there shape.
there are a ton of marfans information sites and message boards that you can go to for more answers

good luck .... and i hope that every thing works out

Answer 4

This is what they suspect Abraham Lincoln to have had. It is mainly characterized by lengthening of the long bones as well as some joint problems. If you are 23 and went this long before diagnosis, chances are you have a pretty mild case.

Unless you plan on going to see plays in theaters with the same names as cars and sitting in a box seat, you shouldn't worry too much. Any sever problems you can face should be consulted with your doctor.