The Marfan Blog

Trendsetting Volunteers Encourage Others to #DanceForVictory

Apr 23, 2020 by The Marfan Foundation

Have you seen this?

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

Pain and Perseverance

Mar 4, 2020 by Christy Nath

When you're living with a condition like Marfan syndrome, it's easy to fall into the thinking that pain is just something you have to live with. 

On top of everything that comes with having Marfan syndrome, navigating through additional medical issues can seem overwhelming at times. It’s easy to give up and accept that nothing will get better and that the pain is just part of living with Marfan syndrome. I was there myself recently, after struggling with ongoing stomach problems - unrelated to Marfan - for two long years.

Reflecting on Awareness

Feb 19, 2020 by Allison Pullins

Topics: Volunteer, Marfan Awareness, 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