Marfan's Syndrome: It Comes from the Heart

I was diagnosed with Marfan's Syndrome when I was born. My older sister had been diagnosed with it when I was just ready to be born, so the doctors just checked for Marfan's in me. At the time, (and even up until this day) I haven't really acknowledged the fact that I have a "chronic disease". Heck, to this day, I have yet to find out where the word "Marfan's" comes from. But what I do know is what Marfan's Syndrome has done to me. I've always had weird joints. My fingers and knees bend in ways not many other people can bend theirs. I am double-jointed. (Which everyone thinks is gross when they see my pinky bend all the way back, but that still doesn't stop them from asking to see it again!) Marfan's also is lined to my scoliosis which creates a curvature in my spine. I have worn a back brace for six years now. My disease also limits me from playing any sports, because my aorta, one of the valves in my heart, is weakened by the Marfan's. This is unfortunate, because I live in a "varsity sports" kind of town. I remember playing soccer up until fourth grade, when my doctor told me that the stress of strenuous running took a toll on my heart. I was going to have to stop playing any and all sports. So when fifth grade soccer came around, all my friends were

asking why I wasn't playing, the only thing I could say back was what it was simply because "I can't." They would continually ask; "But why can't you?" And at the time, I couldn't answer that question. It was because of my Marfan's Syndrome. Which was frustrating to me, because my younger sister didn't have Marfan's, and she can play sports, so why did I get this disease? Unanswered questions made me talk to my doctor about Marfan's. I asked him if I could play sports in the future, and he grimly shook his head "No." Which upset me even more. But as time wore on, I began to realize that even time could not heal Marfan's Syndrome. I started to accept who I was and what I could do, other than sports. My talent ended up being the piano. I have played for over seven years. I also babysit a lot, and love something that is not considered a sport to anyone other than me: walking.

So time can't heal my chronic disease, but what can heal is my ability to accept myself for who I am on the outside and the inside. Leaky heart and all.