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

When it Feels Like Marfan is Winning

Nov 1, 2016 by Latasha Doyle

About six months ago, I made the decision to “retire” from my career as a full time nanny at the ripe old age of 27. I didn’t make that decision because it was time to move on, or because I was just so over being a nanny - quite the opposite in fact. I retired because my body could no longer keep up with the kids I cared for. I retired because Marfan syndrome wasn’t going to let me do the work I loved any longer.

Topics: Marfan Community, 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

Linh Ngo: My Marfan Story

Jul 20, 2016 by Linh Ngo

Part 1 of Linh Ngo’s Marfan story is reprinted here with permission from the author. You can read her entire four-part Marfan Tale on her blog.

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