The Marfan Blog

My Daughter's First Marfan Conference - A Decade After Diagnosis

Mar 11, 2014 by Jennifer Nielson

There we were, at The Marfan Foundation’s 2013 Annual Family Conference in Beverly Hills, California, for the first time. Why had we waited ten years to participate? I think back to when my daughter Hadley was diagnosed with Marfan syndrome and am filled with regret. We missed a decade of these annual conferences and opportunities associated with The Marfan Foundation during those first few critical years. Because Hadley has always been so well adjusted and supported by friends and family, I hadn’t seen the need. After all, we were on top of her medical care, regularly visiting the doctors and are fully aware of her treatment options. I just couldn’t see how attending a conference devoted to Marfan syndrome could benefit us. I couldn’t have been more wrong.

In truth we had never even met another person with this syndrome before we attended the conference. Hadley approached it with the same skepticism I felt, but soon discovered there were so many kids her age that could relate to her. She made new friends quickly and they formed a support system. She felt understood by her peers in a way she had never thought possible. I watched her laugh and bond with other remarkable kids so much like her. I, too, made lasting friendships with parents dealing with the same emotions and concerns I have had. We met with renowned doctors who were experts in Marfan syndrome. They generously donated their time, examining hundreds of people living with this condition. It put my mind at ease to know that we were on the right track.

Topics: Family Planning, Marfan Conference

Flaunting Every Single Bit of My DNA - Living with Marfan Syndrome

Feb 6, 2014 by Lisa Dubin

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!

Topics: Marfan Conference, How the Body is Affected

vic • to • ry

Sep 16, 2013 by The Marfan Foundation

[vik-tuh-ree, vik-tree]

Topics: Marfan Conference, Marfan Community, Living Successfully