December 17, 2012

Maine man with Marfan syndrome seeks to spread the word

It took 35 years for Gary Bennett, 61, to learn the true cause of his father's death and to mobilize the medical establishment to prevent him from suffering the same fate.

By Matt Hongoltz-Hetling
Staff Writer

(Continued from page 1)

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Gary Bennett, 61, of Oakland, has Marfan syndrome, and is trying to spread awareness of his life-threatening condition.

Staff photo by Michael G. Seamans

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Earl Bennett, father of Gary Bennett, pictured in 1945 with his wife, Lorraine.

Contributed photo

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Instead of viewing the diagnosis as a death sentence, Bennett saw it as a path to survival.

"I'm the luckiest guy in the world," he said.

After being diagnosed, Bennett told family members, who began to consider the possibility that they, too, had inherited the syndrome. His brother, sister, son and nephew all discovered that they have Marfan. Another brother and another son are unaffected.

According to Bennett, the cardiologist spent years monitoring the size of his aorta to see whether it would enlarge to about 5 centimeters in diameter, at which point the risk of doing the surgery is outweighed by the risk of not doing the surgery.

"The hardest part was, I had no symptoms," Bennett said. "They're telling me I have a bomb in my chest, but I feel fine."

In late 2007, his aorta became large enough to be considered operable; in May 2008, doctors replaced the portion of the aorta closest to his heart with a sheath made of polyester fibers.

During the 12 weeks when he was recovering, he said he worried about the real possibility that a cough or sneeze could endanger his life.

"If anything ruptures, you're going to die," he said.

Today Bennett has become a member of the National Marfan Foundation and works actively to spread awareness about the disorder in the hope that others will learn from his experience.

He said Marfan effects are treatable, but medical interventions are much more effective when Marfan is diagnosed.

"It's just something they need to know when moving forward," Bennett said.

Bennett said everyone should get copies of his or her parents' autopsy reports.

"I don't want somebody to die because they're missing a little bit of information," he said.


Matt Hongoltz-Hetling — 861-9287

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Additional Photos

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Some think President Abraham Lincoln may have had Marfan syndrome.

Photo by Alexander Gardner, Library of Congress


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