The Marfan Blog

Lifesaving Education

Nov 13, 2018 by The Marfan Foundation

 

There are few things stronger than a mother’s intuition. The strength of this “knowing” is so deep, in fact, that it could be life-saving. That was certainly the case with Jayla and her mom, Becky. 

Topics: Marfan Community, Marfan Awareness, Quality of Life

We Found Our Family

Nov 9, 2018 by The Marfan Foundation

 

For most people, family is the first group of people we know and trust. Newborn babies know their mothers by sound. Kids instinctively look to the people they trust for social cues. In a lot of cases, this tight circle is the family into which a child is born. In other cases, family is created over time with friends and neighbors who love and support one another like any family. 

 

Topics: Marfan Community, Marfan Awareness, Quality of Life

Globetrotting When It’s Hard to Trot

Oct 22, 2018 by Dawn Knowles

I’ve always dreamed about exploring new places, but in my fantasy explorations, my body is strong and capable and I can do whatever I want. That, however, is not my reality.

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.