The Marfan Blog

Jim Cavan: The Journey to Backpack Health

Sep 24, 2018 by Jim Cavan

Maggie, with her mom, Jennifer, at the Foundation's Boston Walk for Victory in June.


As anyone with a rare disease will tell you, the health journey is extremely nuanced and complex.  It’s difficult enough having to deal with the symptoms themselves, but managing one’s care makes it that much more challenging.

Topics: Healthcare Management, Medical Management, Tips, Research, Marfan Community

A Workplace Issue You Probably Didn’t Anticipate

Aug 9, 2018 by Kris Knauf

It never gets easier. Each time I have to tell someone new about my husband's condition, it seems like I go around in the same circles, trying to fully explain what Marfan syndrome is and what it means for us as a couple. Each time, I feel as though I've failed to adequately put into words what exactly we're up against. And of the many uncomfortable conversations I've had to have over the years, I can honestly say that the one I still struggle with the most is the one I have to have with my boss whenever I need to update her on the current status of my husband's health.

Living with the Typical Marfan Body Type

Jul 26, 2018 by Barbara Miller

“Oh, my goodness, how skinny you are.”

Topics: Physical Activity, self care, Healthcare Management, Tips, Quality of Life

A Make-Over Because of the Marfan Annual Conference

May 26, 2018 by Auburn Ponder Anderson

Ashley Burks was 23 when her life changed. That year, 2005, she excitedly attended the Marfan Foundation’s Annual Conference in St. Louis. Upon arrival she was overwhelmed with emotion—for the first time in her life she saw other women who looked like her! Lean and lanky with long faces like hers, they looked like family. And as she got to know them, she was overjoyed that they had Marfan syndrome like she did, and they understood what she had gone through in her life.

Topics: Quality of Life, Living Successfully, Marfan Community, Marfan Conference

The Marfan Foundation and Backpack Health: Frequently Asked Questions

May 17, 2018 by The Marfan Foundation

The Marfan Foundation announced that, starting today, it is making a new app available for free to people with Marfan and related disorders – and their families – to securely manage their medical records.

Topics: Quality of Life, Healthcare Management, Living Successfully, Medical Management