The Marfan Blog

Marfan Moms: The Ultimate Support Group

Feb 23, 2021 by Heather Earnhart

When my daughter, Gabriella, was diagnosed with Marfan syndrome at the age of five our family was forever changed in ways that were unexpected. There was a feeling of relief that finally came with having an answer for Gabriella's health issues. There was a feeling of fear as we stared in the face of this rare condition that we knew absolutely nothing about, and that was now embodied in our daughter. And there was also a feeling of isolation not knowing anyone who understood what this was all really like for us. Our younger child, Nicholas, was only 18 months old at the time. He is the best brother to Gabriella and her number one protector.

Topics: Marfan Awareness, Marfan Community, Quality of Life, Children and Marfan

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