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Need Advice/support! Does anyone on here have experience with or have Marfan's Syndrome?

Since I was 15 years old my lungs have randomly collapsed (spontaneous pneumothoraxies) but no doctor could ever figure out why? I have been tested for Alpha 1 anti trypsin several times- negative. But this weekend an urgent care clinic mentioned Marfan syndrome...I fit many of the criteria and it would feel great to know why, but I'm scared of the heart problems associated with it. I see my PCP tomorrow to begin the process of diagnosis and I'm nervous.

 
KaylasMiracle

Asked by KaylasMiracle at 1:02 PM on Aug. 3, 2009 in Health

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Answers (1)
  • My grandfather died at age 59 due to self-dissecting aorta related to Marfan's Syndrome. The good news is that in the 20 years since, they've made some progress with treatment and the life expectancy for Marfan's (if that's what it actually is) has progressed from 57 to 75, which means it's entirely possible to live a fairly normal life.

    My mother was tested for Marfan's after he died (since it is a genetic disorder). She does not have it, though she has a similar connective tissue disorder that does NOT have the cardiac complications. Luckily that means she did not pass it to me, though I have more than a few of the physical markers for Marfan's. (I have not been tested but it's likely I inherited my mother's condition.)

    The best resource I can suggest at this point is the National Marfan Association: http://www.marfan.org/marfan/.

    Keep your chin up and don't borrow tomorrow's troubles over it. Today has plenty. :)
    geminilove

    Answer by geminilove at 6:24 PM on Aug. 7, 2009