Hey there guys! I stumbled across this group in a search, and so joined.
I haven't been officially diagnosed with Marfan's as of yet (am age 18, currently, was evaluated when I was 15), but I'm pretty sure that I have it. I'm short one major criteria required for diagnosis, because my aorta is dialated a bit more than normal but the cardiologist said I'll probably grow into it (then again, I haven't been back in two years, so dunno how that worked out), and my eyes are normal. I am, however, the posterboy for skeletal symptoms, being 6'1" and 135 lbs, pectus carinatum, hypermobility, stretch marks, positive wrist and thumb indicators, scoliosis, and flat feet. I'm pretty sure my wingspan exceed my height by a slight margin too, but haven't accurately measured lately.
Anyway, I also lack a family history of official Marfan's, but the men on my dad's side were always tall, and some were noticeably thin, and hence I get told that I look like my great-grandfather or whatnot. However, no one before me was diagnosed or even evaluated, so family history is out the window, as my father doesn't have it and neither does my grandfather. BUT, another twist in the plot, my youngest brother exhibits symptoms, like being tall and thin for his age, with a pectus carinatum. He hasn't been evaluated for Marfan's. That's enough familial evidence for me, but not for doctors. I don't necessarily blame them, but it sucks.
So in essence, I think I have it. It's one of those thing you just <i>know</i>, you know? The echocardiogram didn't show any dangerous abnormalities with my heart, but oftentimes I'm very... aware of my heart because the beating produces a sensation, a feeling. It's something akin to pain, but it's not painful. It's strange. I also, after sitting down and then standing up (especially when hot), get tunnel vision and feel faint (and have fainted on occasion). I know that's nothing spectacular in relation to Marfan's, but fainting because of that is because of the blood flow to your brain, and if there's an abnormality in my heart, however slight, then that would explain why the blood flow would induce such spells.
Yeah. It's basically a waiting game for me; not a question of if, but when. Until either my aorta goes to hell, or my eyes screw up royally (both of which, coincidentally, are associated with age), I doubt I'll be diagnosed, which sucks majorly. In any event, (if I do have it) I have a rather mild case of it, from what I've seen/read of you all. Anyway, I'm happy to be here, even if I'm not officially a Marf kid. XD