One in 5,000 people has a heart condition called ARVD.
It typically impacts young athletes and can cause sudden cardiac death if left untreated.
Carl Willis explains how an early diagnosis and lifestyle changes can drastically improve a patient's outcome.
Preston Haugh grew up on the soccer field.
He trained intensely year-round, traveled the world for games and even made it onto a US regional Olympic development team.
But four years ago, he noticed his performance on the field was off. "On the field I’d feel light headed, very winded when I shouldn’t have been," said Preston.
After passing out abruptly on the sidelines one day, he got checked out and diagnosed with a heart condition called ARVD. "I didn’t know what to think – is this real? Are you serious? Is this happening?" said Preston.
Dr. Hugh Calkins Director of the ARVD program at Johns Hopkins- says the condition is inherited. A genetic mutation predisposes a person to developing ARVD in puberty.
"It affects young highly athletic people," said Dr. Calkins. "The question is will they get ARVD mainly has to do with how much exercise they’re doing."
Dr. Calkins says that intense exercise can actually be quite harmful to patients and escalate the condition and adds that men have worse outcomes than women.
"They present at a younger age, more likely to present with sudden cardiac death or life-threatening arrhythmia, so they do worse because testosterone exacerbates the condition," said Dr. Calkins.
Warning signs include palpitations, heart racing, passing out abruptly, and a family history of sudden cardiac deaths.
For treatment, some patients, like Preston, receive implantable defibrillators and all patients must stop competitive and endurance sports.
"If you dramatically reduce your exercise, you have more than an 80% reduction in your risk of having a dangerous life-threatening arrest going forward," said Dr. Calkins.
Preston hung up his soccer cleats and turned to golf.
He's now a member of the Bates College golf team, thriving and staying positive.
After a person is diagnosed, experts advise all family members to be tested.
If a child has the genetic mutation, they suggest steering them toward non-sports activities because you can actually prevent the disease from developing in a young person by avoiding intense exercise.