Know the Signs, Fight for Victory

Flaunting Every Single Bit of My DNA – Living with 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!

Throughout the weekend, fashion tips were shared among the teens and a good 50% of our time was spent shopping and advising each other. (Do you really think it’s a coincidence that the conference hotels are always within extremely close range of a giant shopping mall?!) And not only were the girls shopping, but the boys were too! Late night heart to hearts made us all realize that feeling good about one’s self is important to everyone, no matter the gender, and that fashion was a great way to go about that.

Later that year, some wonderful girls made a list of stores that carried extra-long jeans, extra-slim shoes and extra-long sleeves which made developing my personal style that much easier. I finally had access to clothes that fit. It also helped that I no longer felt alone.

Though by now my narrative sounds like it has come straight out of a fairy tale, predictably, high school still ended up being as disenchanting as I was expecting it to be. But, I felt so much better in my own skin! This allowed me to develop my own style: I would make it a point to challenge myself daily and step out of my fashion comfort zone by constantly trying out new things – a process that enabled me to find out what I liked, and disliked. It also made shopping a lot easier because I knew what I was looking for (and it also allowed me to get to know myself a little better in the process.) Today, at the age of 21, I am a self-proclaimed fashion junkie and I am no longer a pectus excavatum (protruding chest bone) and an overly protruding hip-bone away from finding my dream dress. I feel good in my own skin and proud of who I am. And it feels so, so good.

Have some fashion tips of your own to add? Let us know what they are in the comments below.

Avatar photo

Lisa Dubin, 21, is both American and Swiss. She is a member of The Marfan Foundation and has Marfan syndrome. She is currently a student at the University of Geneva in Switzerland.

Share to