“Are you anorexic?” “Why are you always hunched over?” These are a few questions I could not answer in middle school. How was I supposed to know I was sick with a rare, barely known disease? When I was 13, I was diagnosed with Marfan Syndrome. I remember the day I sat on that cold examining table, waiting for the results of some x-rays and tests. Scared, I heard every single step the doctor took to my waiting room and the one solemn knock on the door. Reluctantly, he came in and sat down in front of me. I knew something was wrong, and I wanted to cry. Slowly, he said, “We aren’t sure at this point, but I believe you have something called Marfan Syndrome.” Confused as ever, I did not know what to say. I did not know anything about this curse. As he explained, he could not even look me in the eye. Maybe it had something to do with the fact that I could have died when I was a child, even now, or the fact that they barely knew anything about it, either. At the end of the appointment, all he could do for me was refer me to a genealogist. I was not sure if I wanted to go to the genealogist. I thought, maybe it would be better if I just did not know anymore than I already do. With a little “support” (more like force) from friends and family, I went. She asked so many questions, and many of them I had no answer to. Measuring my arms and legs, she never said a word. When she was finished with the questions and measurements, she reluctantly told me there is no point in the $2000 blood tests, I had Marfan Syndrome. She explained everything to me: what it was, what would happen, and what my options were.

Marfan Syndrome mainly has to do with the aorta valve in the heart. If it stretches too far from exercise, stress, etc., it could stop retracting and I could have a heart attack. I could have died when I was a kid, and I could die anytime without proper care. Marfan Syndrome also affects various physical and mental features of the body. My back is hunched (called kyphosis) at 75 degrees, and at 90 degrees, I would have to have surgery. Surgery is not an option for me right now given the fact I would be paralyzed almost 6 months for recovery. Marfan Syndrome affects my weight. I have always been skinny and fragile, and I cannot help that. Every year, I am required to have echocardiograms to check my heart. If my heart gets too weak or my aorta valve stretches too far, my options are medication or heart surgery. Marfan Syndrome also affects my brain, and I have random bouts of depression that I cannot explain. For now, all I have to do is wait and live my life to its fullest.

I realize that I may look and act different from everyone else. But I do not let that get to me. I have plenty of friends and family that care for me and support me through the tough times. I understand and except that any given day, I could have a heart attack and possibly die. Even if I die when I am young, I will have no regrets. Thinking back on the past couple years, I am glad I went to the doctor and found out what was wrong. I believe God has given me the chance to talk to children suffering from diseases and other problems and tell them my experiences. Who cares what people think and say? I intend to live life to the fullest, and never regret any day of my life.