Kiss of Death? Hidden Heart Condition Takes Teen's Life

"We had our whole family tested, and found my wife had the same condition, and my wife's sisters, my and niece also have it," said Annie's father, Anthony Lucatuorto.

According to the Sudden Arrhythmia Death Syndromes Foundation, while most people are placed on daily medication to manage their condition, patients with more severe cases are implanted with a cardiac device, or ICD, that automatically shocks the heart back to normal.

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As more cases of SADS are detected in the U.S., the challenge is no longer about preventing sudden death, Ackerman said.

"Our focus should also be on how we enable these young people to live and thrive despite this diagnosis," said Ackerman.

For Annie, the condition meant giving up competitive soccer and at times sitting out on physical education class, but she still plays tennis and golf. And, she says, her competitive nature remains.

"At first I was really restricted with what I could do, but now I've gotten used to it so I know how to pace myself," she said.