The Marfan Blog

Top Five Things I Wish I Knew Before My Aortic Surgery

Dec 1, 2020 by Dominga Noe

When I had my open-heart surgery to repair my aorta back in the summer of 2014, I did not have many questions. I wanted the process to be over as soon as possible and I trusted that my surgeon, Dr. Craig Miller, and my cardiologist, Dr. David Liang, would be able to make that happen successfully.

Topics: Marfan Community, Living Successfully, Quality of Life, Healthcare Management, Medical Management, wellness, Surgery

Fierce Compassion: Becca Weust and the Stories She Tells

Apr 6, 2020 by Beth Kephart

A few years ago, while writing stories for a healthcare company, I found myself in conversation with Becca Weust, a young woman who had been diagnosed with Marfan syndrome as a child. Becca had faced many complications—heart surgery and brutalizing headaches, a collapsing sternum and deepest exhaustion—and she described them to me, for that was the purpose of my call. But Becca was so intelligent, funny, interesting, and warm, that I did not wish for our conversation to end.

Topics: Marfan Community, Children and Marfan

Jimmy's Magic Turtle

Feb 6, 2020 by Cynthia Lee De Boer

Topics: Marfan Awareness, Marfan Community, Children and Marfan, Neonatal Marfan

#VictoryToday

Dec 2, 2019 by The Marfan Foundation

On December 3, the entire world will be participating in Giving Tuesday. Many people with Marfan and related conditions are supporting The Marfan Foundation because of our impact on their lives. Liam, Peter, and Katie share how the Foundation is helping them achieve #VictoryToday.

Topics: Marfan Awareness, Marfan Community, Living Successfully, Education, giving tuesday

Invaluable Little Moments

May 10, 2019 by Beth Utz

At a time when technology infuses our lives in almost every way, it is hard to imagine that the personal computer was invented only 35 years ago. Around that same time, a group of concerned moms and physicians were rallying around a rare condition called Marfan syndrome. Their goal was learning as much as they could to spread awareness. After forming a nonprofit, known today as The Marfan Foundation, they started bringing people together for an annual conference. The first Marfan Annual Conference was held 35 years ago this year.

Topics: Marfan Conference, Marfan Community, Loeys Dietz, Education, Annual Conference