New Strategy Can Help Prevent HCM, The Most Common Cause Of Sudden Death In Otherwise Healthy Young People

NEW YORK (CBSNewYork) - We've all heard the tragic tales of teens and young adults suddenly collapsing and dying while playing sports.

It's often from a rare heart condition, even though the young person seems perfectly healthy.

CBS2's Dr. Max Gomez reports on a strategy to save those patients most at risk.

Kevin Whelan recalls the moment he learned his oldest brother Kyle collapsed and died. He was only 26.

"It was devastating," he said.

Kyle had hypertrophic cardiomyopathy, or HCM, a genetic disease of the heart and the most common cause of sudden death in otherwise healthy young people. But Kyle wasn't the only one in the family with it: His father and all three boys had HCM, including Kevin.

"After Kyle died, I was wondering when was my event," he said.

Searching for answers, the Whelan family found doctors Barry and Martin Maron, a father-son team of cardiologists at Tufts Medical Center in Boston who had developed the sudden cardiac death prevention strategy.

"To pick out the patients who are most likely to have sudden death and use the defibrillator selectively in those patients," said Dr. Barry Maron.

Using a patient's history, physical exam and special imaging, they can now determine with near certainty who needs an implanted defibrillator and who does not.

"We really have been able to reduce sudden death in this disease to almost zero," said Dr. Martin Maron.

In a new study in JAMA Cardiology, over a 17 year period 82 patients with HCM who received defibrillators based on the strategy experienced a lethal heart rhythm and were shocked back to life.

Based on the doctors' recommendation, Kevin received a defibrillator. Then, several years ago, at the age of 24, Kevin started to feel lightheaded and collapsed while jogging on Cape Cod.

"Within 40 second of being passed out it delivered therapy and saved my life," he said.

Kevin, his surviving brother, and his father all have defibrillators now but Kevin often thinks his brother Kyle could have been saved had he gotten the same advice.

Doctors say this strategy can also be applied to children and teens with HCM and hope it will be adopted by other medical centers.