The Marfan Blog

Meet Your Gene:  An Introduction to the Marfan Gene and Current Research

Jan 10, 2017 by Roanne Weisman

Topics: Marfan Community, Diagnosis, Research, Living Successfully, Quality of Life

The Tale of Two Opposites: A Marfan Conundrum

Dec 1, 2016 by Latasha Doyle

Isaiah Austin, who was diagnosed with Marfan Syndrome in 2014, left the NBA draft to better care for himself and the effects of his condition. But yesterday, November 30, 2016, Isaiah announced that he was beginning to pursue his dream once again.

Topics: How the Body is Affected, Marfan Community, Diagnosis, Living Successfully, Quality of Life

Sinclaire’s Story from the Heart

Sep 8, 2016 by Sinclaire Schuetze

Most people affected by Marfan syndrome experience a life-changing moment when they or a loved one is first diagnosed. My Marfan journey, however, has always seemed a part of my life with no clear beginning. My mother was the first person in our family to be diagnosed with Marfan syndrome. It had been my grandmother’s just-by-chance reading of a newspaper article about the disorder that led to my mother’s diagnosis at age 7. Fortunately, when I was a very young child, my doctors knew to look for the physical characteristics right away and, when I was about 3 years old, it was determined that I too had Marfan syndrome. When I started elementary school, of course there were little issues here and there, such as being taller and thinner than most kids, sitting out for certain activities during gym class, and taking annual trips to Johns Hopkins Hospital for checkups. For the most part, however, I thought of Marfan syndrome as no big deal. It was something I had, like hazel eyes and brown hair.

Topics: How the Body is Affected, Marfan Community, Diagnosis, Living Successfully, Quality of Life

What Fulfills You?

Aug 16, 2016 by Molly S. Weiss

When you think about your life as an able-bodied person, what fulfills you? Does going to work and seeing your colleagues make you feel successful? Do you feel better about yourself when your boss offers you that promotion you’ve been striving for? You worked really hard for that promotion and you deserve it. How about when you see the balance of your bank account? Do you have a little bit leftover after your bills are paid? I’m sure it’s nice to go into work Monday morning with that new handbag or a pair of earrings you’ve been eyeing at Macy’s for a while. Those things, they fulfill you, make you feel like a person put on Earth for a reason. You went to college and earned a degree, and now you can do what you were taught how to do. It’s a very fulfilling way to live.

Topics: How the Body is Affected, Diagnosis, Living Successfully, Quality of Life

From the Journal of Owen Gray: 2015 Annual Family Conference

Sep 22, 2015 by Owen Gray

Owen Gray, 14, was diagnosed with Marfan syndrome in the summer of 2014. He was excited about attending his first annual family conference and journaled his thoughts in the days leading up the conference and during it.

Topics: Volunteer, Marfan Community, Diagnosis