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

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