Many people with Marfan syndrome have difficulty gaining weight, especially when they are younger, no matter how much they eat and how many protein shakes they consume. Some do find that they do put on weight, particularly around their middle, when they get older. (And while Marfan syndrome is frequently associated with being very thing, it is possible to be heavy and have Marfan syndrome.)

Though I stand at a measly 5'8 for a “Marf,” as a freshman in high school, I towered over my classmates and was constantly teased for my beanpole silhouette. My flat feet made shoe shopping a nightmare, and finding 37'' inseam jeans was like looking for a needle in a haystack. I wanted to look good and feel good about myself, but I had no idea where to start.

When I got to my first Marfan conference, I met so many confident girls. They were beautiful, and they shined and flaunted every single bit of their DNA! The gender breakout session was a real eye-opener and changed the way I looked at my body. That night, when I got back to my hotel room, I pledged to NEVER beat myself down and belittle myself ever again - from now on, I was going to work it!

People with Marfan syndrome who are diagnosed early and receive proper medical treatment can now live a lifespan equal to people in the general population. This is great news, right?