The Marfan Blog

Empowerment Means Saying Goodbye to the Sidelines

Nov 27, 2018 by The Marfan Foundation

Keith has never been terribly outgoing. He’s taller than other kids and wears thick glasses. He does not like the glasses. They’ve always bothered him, but now, as he gets a little older and he gets more questions about them from kids his age, he really wishes he could just wear contacts.

Topics: Marfan Community, Marfan Awareness, Quality of Life

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

My Marfan Story: Kacey Lamphier

Feb 27, 2018 by Kacey Lamphier

The month of February is extra important to me as it marks the month of the heart. I have been living with Marfan syndrome for 30 years; however, I’ve only been diagnosed for 22 years. I try every day to share my story and knowledge about the condition. The more we speak up, the more people we can be helping. Here is my story.

Topics: Living Successfully, Marfan Awareness, Marfan Community

Marfan Diagnosis: A Game Changer

Feb 20, 2018 by Rita McCrerey

A Marfan or related disorder diagnosis can be elusive for an athlete, particularly an athlete who does not display the typical cluster of characteristics.

Topics: Marfan Awareness, Physical Activity, Marfan Community