By AMERICAN HEART ASSOCIATION NEWS

0730-SFTH-Michael LaBelle_Blog

Michael LaBelle recently met the man who discovered the disease he was diagnosed with as a toddler.

Japanese pediatrician Tomisaku Kawasaki, now 90, first described the mysterious disease in 1967, calling it GOK, for “God only knows.” It is known today as Kawasaki disease.

“Not many people get to have the chance to meet the person responsible for discovering the disease they are diagnosed with,” said LaBelle, 20, who met Kawasaki at the 11th International Kawasaki Disease Symposium hosted by the American Heart Association in February. LaBelle was there as a coauthor of several studies done with his Toronto cardiologist, Brian McCrindle, M.D.

Kawasaki wanted to hear LaBelle’s story, which started at 18 months old.

“After all these years, he still cared more about the patients than telling his story,” said LaBelle, now a nursing student who plans to specialize in cardiology.

LaBelle’s story started like many others — with misdiagnoses.

A severe fever was followed by a rash and red eyes and lips. Doctors first thought it was scarlet fever and an allergic reaction. Then when his hands and feet swelled a few days later, they thought it was a rare condition that affects the skin.

LaBelle was eventually diagnosed and treated for Kawasaki disease, but not before it had taken a toll on his young body, causing five bulging coronary aneurysms.

The illness is characterized by acute inflammation of blood vessels and typically affects children, more often boys, younger than age 5.

Japan has more cases than any other country, and in the United States, about two in 10,000 children under 5 are diagnosed each year, according to statistics from the AHA.

Michael LaBelle (right) with Dr. Brian McCrindle and Dr. Kawasaki at the International Kawasaki Disease Symposium in February.

Michael LaBelle (right) with Dr. Brian McCrindle and Dr. Tomisaku Kawasaki at the International Kawasaki Disease Symposium.

Doctors aren’t sure what causes Kawasaki disease, but researchers suspect it may be triggered by an immune response to an acute infectious illness based in part on genetic susceptibilities.

LaBelle’s late diagnosis left him with serious cardiovascular problems that require him to take blood thinners and other medications. At 13, he underwent bypass surgery after two coronary aneurysms began to block the flow of blood to his heart.

Because blood-thinning drugs can increase the risk for severe bleeding, LaBelle wasn’t allowed to play contact sports as a child and has to be careful to avoid even minor injuries.

“I’d get nose bleeds that my mom would say left our house looking like a war zone,” he said.

LaBelle’s conversation with Kawasaki has made him an even more passionate advocate for raising awareness about Kawasaki disease and other illnesses that affect children.

“Living with the disease has been a challenge that I’ve been willing and able to overcome,” he said. “I want people to know that it doesn’t destroy your life. I’ve never let it hold me back from achieving anything.”

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Do you know a “Story from the Heart” we should tell? Send an email to stories@heart.org that’s as brief or as detailed as you’d like.

Photos courtesy of Michael LaBelle