The Marfan Blog

Cindy Amdur

Cindy is a board member of our Mid-Atlantic Chapter. Her son, Micah, was diagnosed with Marfan syndrome at the age of 5.

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Cindy Amdur - My Marfan Story

May 29, 2014 by Cindy Amdur

“I wouldn’t worry too much about the rapid heart beat, but you should look at this.” Those words began our adventures with Marfan syndrome. Our son Micah was five when an insightful pediatric cardiologist at the Alaska Native Medical Center in Anchorage identified an already enlarged aorta and suggested he might have Marfan. We had taken him to see the doctor because his heart would sometimes race for no apparent reason. One fortunate trip to this doctor and soon we were neck-deep in research, more medical appointments, and, luckily, our association with The Marfan Foundation.

Topics: Family Planning, Marfan Conference, Marfan Community, Living Successfully