Discussions By Condition: Bone conditions

I think I have Marfan syndrome and am scared

Posted In: Bone conditions 0 Replies
  • Posted By: Anonymous
  • May 31, 2015
  • 05:51 AM

I'm a 15 year old girl. I have all the symptoms except myopia and I have a normal breastbone. I'm tall (5'7") with disproportionate limbs, an armspan greater than my height, unexplained stretch marks, long fingers and toes, flat size 9.5-10 feet, weight 98 lbs and have never been able to keep up a weight over that amount. As much as I want to deny it I think I'm that one out of every 5-10,000 people who has Marfan syndrome. I still haven't told my mom but I don't know what to say or whether she will take me to be diagnosed or not because she keeps telling me "You are a perfectly healthy girl" etc. whenever I go to her with health questions. I don't feel comfortable asking my dad about it.

I'm also scared and may or may not be awake at 2 am crying in my bed right now. Swim training starts soon and we train hard, I don't want to get an aortic dissection during that. Would I even be able to keep swimming or doing sports with marfan syndrome? How long will I live? Somewhere I read that the life expectancy used to be 25 but is now in the 70s?

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