The Marfan Blog

Beautiful Gift

Jul 26, 2017 by Alison DenBoer

Hi my name is Allison. I was diagnosed with Marfan syndrome when I was 15 years old after my older brother had open heart surgery for an aortic root repair. Out of five siblings, four of us have Marfan syndrome.

Topics: Family Planning, Marfan Community, Living Successfully

Jamie Efurd - My Marfan Story

Feb 8, 2016 by Jamie Efurd

“Make it through the door, Jamie. Make it through the door.” Those were my first thoughts as we were leaving the pediatric ophthalmologist appointment for my daughter, Callie (age 4), after her doctor mentioned that we should look into something we had never heard of before, Marfan syndrome. The door I was referring to was the front door to the building, the building I initially thought we were going into just to get our daughter some glasses. I needed fresh air immediately and for my daughter not to see me break down into tears.

Topics: Family Planning, Marfan Awareness, Marfan Community

Carolyn Fisher - My Marfan Story

Nov 20, 2015 by Carolyn Fisher

“You are so lazy! Why don’t you get a life!”  These words I heard belching from my mouth at my son. Ignorance can call you to say things you might regret.

I’ve spent 3 decades in sports - over 80,000 hours of gymnastics, 7 world titles in Arm Wrestling, and coached everything from our kid’s soccer games to recreational gymnastics to 8 years as a PE coach in a private school. How could it be that my son, Austin, would - instead of kicking a perfectly passed soccer ball to make a goal – raise a pointer finger at the soccer ball, and pretend he was shooting at it? How could it be that my son would opt for “wheelies” long after they were a fad?

Topics: Family Planning, Volunteer, Marfan Community, Team Victory

Victory Is... Twenty-Five Bonus Years

May 15, 2015 by April Abbott

In 1989, I was beginning my sophomore year of college when I received a call from home. While he was in a meeting, my dad, Roy Abbott, had started experiencing chest pain. He was taken to the hospital, where they initially assumed he was having a heart attack. What had actually happened was a dissection of his descending aorta. It was at this time that he received his diagnosis of Marfan syndrome.

Topics: Family Planning, Marfan Community

Jennifer Lynch - My Marfan Story

Sep 26, 2014 by Jennifer Lynch

My daughter, Emma, just started 6th grade - middle school in our district. Like a lot of parents in my town, I watched her get on the bus, looking more grown up than ever, and then stood there for a moment, wondering, “How did THAT happen? Didn’t I just get her to give up her pacifier?”

Topics: Family Planning, Volunteer, Marfan Community