SalemNews.com, Salem, MA

May 9, 2014

Marfan Foundation to host walk at Willows

About 1 in 5,000 people have syndrome

By Neil H. Dempsey
Staff Writer

---- — SALEM — The key to beating Marfan syndrome is to catch it early.

That’s the message the Marfan Foundation is spreading in anticipation of its first Boston-area charity walk, which will take place tomorrow at Salem Willows. The mile-long Walk for Victory is expected to draw hundreds of people who are personally affected by the disorder or family of somebody who is.

Marfan syndrome is a genetic disorder that affects the body’s connective tissue, causing problems in blood vessels, joints, bones and eyes. Symptoms include spontaneous lung collapse and vision problems like severe nearsightedness, dislocated lenses, detached retinas, and early glaucoma or cataracts.

Learn more about Marfan syndrome.

That’s the message the Marfan Foundation is spreading in anticipation of its first Boston-area charity walk, which will take place tomorrow at Salem Willows. The mile-long Walk for Victory is expected to draw hundreds of people who are personally affected by the disorder or family of somebody who is.

Visible features associated with the syndrome include crowded teeth; long arms, legs or fingers; a tall and thin body type; a curved spine; flexible joints; flat feet; and stretch marks that aren’t due to weight fluctuation. Also, a person’s chest might jut out or sink inward.

Although the foundation estimates 1 in 5,000 people have the syndrome, it says about half of them don’t know it. And they’re at severe risk, as the syndrome can cause sudden death via a tear or rupture in the aorta, the artery that ferries blood away from the heart.

One participant in Saturday’s walk will be Suzanne Kouri, a Salem native who now lives in Lexington and whose 13-year-old son, Yamil, was diagnosed with Marfan syndrome in 2002. Kouri said she and her husband began noticing “strange things” about Yamil right after he was born — mild physical manifestations of the disorder like high-arched feet, a dent in his sternum and big hands.

“He had really large hands,” Kouri said. “I wanted to call Rick Pitino to come and scout the kid to play basketball.”

Kouri found the Marfan Foundation shortly after Yamil was diagnosed and said she used it to find “credible, reliable, evidence-based information so I could drive my son’s treatment plan.” Today, she serves on the organization’s board of directors.

“In time, I found great comfort in knowing other families and hearing success stories about people who were living fully,” she said.

Marfan affects everybody differently, and there is no cure. Still, with proper treatment, and early intervention, people with the disorder can lead full lives.

One of Yamil’s most harrowing experiences with the syndrome came in 2010, when the retina in his right eye detached. His parents thought he might lose the eye, and even with glasses, his vision couldn’t get any better than 20/220. An eye surgeon was able to fix the problem.

“We were really lucky,”Kouri said.

Kouri said her son is doing well these days, but “we’ve certainly had our bumps.” Now that he’s 13, he’s hitting the age where more turbulence can be expected.

“That’s sort of when you worry about their aorta changing and growing more than it should be,” Kouri said. “He has serious cardiac involvement.”

Kouri said she had a hand in bringing the walk to Salem.

“Salem has such a great historic value, and certainly, Salem Willows Park is convenient, with parking and a beautiful walk,” she said.

The walk will begin at noon and will feature snacks and games. The entry fee is a donation of any amount; walkers who raise more than $100 will receive a T-shirt.

Money raised by the walk will be go toward research, as well as programs and services the foundation provides.

Neil H. Dempsey can be reached at ndempsey@salemnews.com or followed via Twitter at @NeilDempseySN.