Friday, April 18, 2014
By Matt Hongoltz-Hetling firstname.lastname@example.org
OAKLAND — Gary Bennett, 61, credits a men's magazine with saving his life after it helped him discover he had Marfan syndrome, a rare condition that also may have affected Abraham Lincoln.
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
Earl Bennett, father of Gary Bennett, pictured in 1945 with his wife, Lorraine.
Bennett said he hopes to help others by telling his story, which began on Christmas night 1973, when his father died of what everyone assumed was a heart attack.
It took 35 years for Bennett to learn the true cause of his father's death and to mobilize the medical establishment to prevent him from suffering the same fate.
"I guarantee you I'd be dead now if it wasn't for that," Bennett said.
Bennett doesn't have the characteristic physical features of Marfan, which usually include a tall, lean frame, long fingers and elongated facial features.
Marfan is a genetic condition that prevents the body from making fibrillin-1, an important component of the body's flexible connective tissue. It can disrupt any of the body's systems that rely on that connective tissue, including the eyes, the lungs, the joints and, most seriously, the heart and cadiovascular system.
According to the National Marfan Foundation, 9 out of 10 people with Marfan syndrome have cardiovascular problems, which can affect heart valves and the aorta, the large blood vessel that carries blood away from the heart.
"Over a period of years, the aorta stretches," Bennett said. "It's like an old pair of socks. There's no elasticity."
As the aorta stretches, it becomes thinner and thinner, increasing the chance that it will rupture suddenly, stopping the heart and causing death.
When Bennett's father died in 1973, the family was told that a heart attack was the cause, even though he was just 50 years old, fit, and didn't seem to be a candidate for heart disease.
Bennett remembers his father, an exceptional high school football and basketball player, for his athleticism.
"He'd shoot baskets one after another and sink them," Bennett said. "It was amazing to me."
For more than 20 years, Bennett believed what he had been told about the heart attack.
But in the 1990s, while working as a safety director for Sheridan Corp. in Fairfield, he came across an article that made him think about the strange circumstances of his father's death.
The article, in Men's Health Magazine, advised readers to seek out the autopsy reports of their parents.
"What your father dies of, you're probably going to die of the same thing," Bennett said. "Or your mother."
Bennett was prompted to contact Norwood Hospital in Massachusetts and ask for the report on his father's autopsy. He couldn't interpret the document's medical jargon fully, but he took it to his general practitioner, who referred him to a cardiologist at MaineHealth Cardiology in Waterville.
One critical piece of information in the autopsy showed that the aorta leading to his father's heart was unusually large.
Because of this, Bennett said, the cardiologist suggested he undergo testing at Brigham and Women's Hospital in Boston, one of only three laboratories in the country that was equipped at the time to map out a patient's DNA for analysis.
Bennett said the cardiologist recommended he be tested for Marfan.
"It was the first time I'd ever heard of Marfan," he said.
Bennett was reluctant to pay $5,000 for the test without knowing whether it would help him. His health insurance company wouldn't cover the cost of the test, he said.
"I deliberated, literally for years," he said.
In 1998, after his doctors convinced the insurance company to pay for the test, Bennett gave 14 vials of blood at the laboratory in Boston.
Shortly afterward, test results showed that he did have Marfan syndrome.
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
click image to enlarge
Some think President Abraham Lincoln may have had Marfan syndrome.
Photo by Alexander Gardner, Library of Congress