Heart Disease Socially Isolates Teens Struggling to Be Normal

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Genetic Testing Cleared Siblings

Wolfe and her husband Steven, 35, waited to have their two boys -- Andrew, 8, and Ryan, 5 -- because they worried about risk of having another child with the medical issues.

"It wasn't a huge risk," she said. "But if we were going to have another child with heart disease, we wanted to make sure we were in good shape financially -- it's very expensive, even with the best insurance."

They met their $5,000 deductible in their first hospital visit of the year. "It's been a wild ride for us," she said.

Early on, Wolfe said their insurance company denied coverage for the prescribed automatic external defibrillator (AED) in the event of a cardiac emergency, because it was considered experimental. And Allison's first elementary school refused to buy one, or to accept an offer from the Red Cross to train staff in CPR training.

"I pulled her out," said Wolfe.

The American Heart Association recommends that AEDs -- computerized devices that can shock a failing heart to pump again -- be in all public places. They are accurate in reading heart rhythm and easy to use with a few hours training.

Today, Allison's school and others in Massachusetts are required to have a sudden cardiac arrest plan, which includes training.

Just recently, Allison's eighth-grade teacher asked her to share her story with her classmates. "I was honored," said Allison, who said each time she switches schools, she get questions from new friends.

"Kids ask if it's contagious -- I think some people get confused with stereotypes about disease," she said. "It poses a lot of social issues because I get really tired having heart problems and that makes people uncomfortable."

The hardest part, according to Allison, is the "exclusiveness" of teens at her age. "I have a good set of friends and they hang out on the weekend and do things. I am not like that. My weekend, I sit at home and read books."

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Metropolitan Autonomous University and Wake Forest Institute for Regenerative Medicine