I first got involved with The Marfan Foundation the summer before my freshman year of high school. I had been bullied all through middle school and was apprehensive at the idea of 'movin' on up', only to end up being at the bottom of the school hierarchy pyramid all over again.
I'd always put a safe distance between Who I Was (a lanky pre-teen) and Why that Was (a lanky pre-teen due to my Marfan syndrome) because I was afraid of Marfan syndrome defining ME. Though they didn't know of my disorder, I thought the kids at school would tease me for being different - and what made me different WAS my disorder. I felt like I would never be able to fit in, and spent nights imagining what I would have looked like had I been born without my condition. This caused me to live in constant denial of what made me who I was, and I refused any type of contact with people who had similar conditions.
In the summer before freshman year, I realized that I was running away from the wrong crowd and decided to give the Foundation’s annual conference a try - and it was the best decision of my life. Though I stand at a measly 5'8 for a “Marf,”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 the annual conference, I met so many confident girls. They were beautiful, and they shined! 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!