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Local News

May 9, 2014

Marfan Foundation to host walk at Willows

About 1 in 5,000 people have syndrome

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.

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