Marfan Syndrome: Rebecca's Story

Rebecca, 19, has Marfan syndrome, a genetic disorder that causes cardiac complications. When she was 3 years old, she was referred to pediatric cardiologist Marie Gleason, MD, at Children’s Hospital of Philadelphia — and she’s been coming to the Hospital ever since.

Rebecca CHOP’s team of experts cares for patients like Rebecca from childhood through adulthood. The strong relationships they form with their patients often last for decades — and make it possible for them to provide truly individualized care.

“It’s great because they know your history, and they know your body,” Rebecca says. “If something is wrong, Dr. Gleason is quick to catch it and assess what needs to be done next.”

Although Rebecca’s heart condition has prevented her from participating in some activities, such as contact sports, she found a hobby that suits her — and her body — perfectly.

“Because of my Marfan syndrome, I have pretty agile fingers,” she says. “I started playing guitar and people would say, ‘Wow, you’ve got really long fingers. It’s cool that you can do those things.’”

Rebecca is also passionate about volunteer work. Last year, she participated in an AmeriCorps program at Grover Washington Jr. Middle School in North Philadelphia, and she continues to look for opportunities to make a difference for others. 

“I’m really grateful for the help that I’ve gotten from Dr. Gleason and from everybody in my life,” she says, “and I try to find a way to give it back.”

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