Ben Carpenter – My Marfan Story
Before I share my story, I want to clarify that the title of my book, “The Bigs,” has nothing...
The Marfan Blog
WORK IT!
I first got involved with The Marfan Foundation the summer before my freshman year of high school....
Nicole Kramer – My Marfan Story
Twelve years ago I married my husband Mike. Up until I met him, I had never heard of Marfan...
Embracing A Road Not Chosen Through Painting
Embracing a road not chosen is a choice that is put in front of all of us when facing an illness...
Aortic Dissection, My Family, and the Annual Marfan Conference
I don’t have the greatest memory, so I am not sure when I attended my first conference. I do...
Weight Gain and Marfan Syndrome – Why Can’t I Put On Weight?
Many people with Marfan syndrome have difficulty gaining weight, especially when they are...
My Daughter’s First Marfan Conference – A Decade After Diagnosis
There we were, at The Marfan Foundation’s 2013 Annual Family Conference in Beverly Hills,...
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