The Marfan Blog

Why I'm Grateful for Marfan Syndrome

Jun 2, 2017 by Latasha Doyle

I was recently reading a book called How to Live a Good Life by Jonathan Fields (which I highly recommend). In one of the chapters, he asks the question:

Topics: Marfan Community, Living Successfully, Quality of Life

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

My Marfan Story: Selma Kerzman

Oct 13, 2016 by Selma Kerzman

Blake and I met in high school. When I went to his high school graduation, I met his mom and dad. I made a comment about how tall he was while his parents were so short. That’s when I learned that his dad was there with his step-mom; Blake’s own mother died when he was eight years old from complications of Marfan syndrome.

Topics: Volunteer, Living Successfully, Quality of Life