The Marfan Blog

Beautiful Gift

Jul 26, 2017 by Alison DenBoer

Hi my name is Allison. I was diagnosed with Marfan syndrome when I was 15 years old after my older brother had open heart surgery for an aortic root repair. Out of five siblings, four of us have Marfan syndrome.

Topics: Family Planning, Marfan Community, Living Successfully

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