My journey with Marfan syndrome has been a long and complicated one. I was first tested when I was 19. At that time, the tests were inconclusive. I have some of the features of Marfan syndrome, such as pectus carinatum (pigeon chest), and was very tall and thin, but my measurements were borderline. I had no known family history, and I hadn't developed any serious heart problems. They told me this is not uncommon because I was still young and many people don't begin to have problems until they are older. The doctors couldn’t confirm that I had Marfan syndrome, but they also couldn’t confirm that I didn’t have it. So here I was in limbo, and limbo was where I stayed for a long time.