The Marfan Blog

Jennifer Nielson

Jennifer Nielson is a member of The Marfan Foundation and the author of Rubberband Girl, a book about her daughter Hadley who is diagnosed with Marfan syndrome. She and her husband have five children and live in Gilbert, Arizona.

Recent Posts

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