After wife’s sudden death, Kentucky congressman speaks about heart health and new legislation

(NEW YORK) — Rep. Andy Barr, R-Ky., is raising awareness for heart health two months after the signing of a new law named for his late wife, who died in June 2020 from a rare condition.

Barr appeared on GMA3 on Wednesday to mark Heart Valve Disease Awareness Day and to discuss the Cardiovascular Advances in Research and Opportunities Legacy Act — or CAROL Act — named for his wife, with whom he shares two daughters.

“This is about Carol’s legacy,” Barr said. “What I want to do is raise awareness and let people know who have this diagnosis, look, this is a big deal. You need to get checked out,” he continued.

His family’s experience had opened his eyes.

He explained that “when she was in seventh grade, Carol was diagnosed with an underlying heart condition, a heart murmur known as mitral valve prolapse. Now, there’s approximately 11 million Americans who have heart valve disease. And for most of them, it’s a benign condition. And we certainly thought it was a benign condition. Our doctors told us that this was no big deal. We just needed to monitor it.”

“But unfortunately, she was one of the 0.2% of Americans with heart valve disease who had a sudden cardiac death event,” Barr said of his wife, who was found dead in their home.

According to the American Heart Association, mitral valve prolapse is a condition that affects the valve between the left heart chambers. Common symptoms include palpitations (bursts of rapid heartbeats), fatigue or chest discomfort.

The Centers for Disease Control and Prevention advises that if doctor hears a murmur (unusual sound) when listening to your heartbeat, “Depending on the location of the murmur, how it sounds, and its rhythm, the doctor may use echocardiography, a test that uses sound waves to create a movie of the valves to see if they are working correctly.”

Barr said on GMA3 that the money in the CAROL Act is important for scientific advancements.

“We can stop this,” he said. “There’s amazing, amazing research that’s going on. We need to fund that research.”

He also urged people to be mindful of their own health.

“With early detection and intervention, this can be fixed and people who have heart valve disease can live long and healthy lives with surgical intervention and other types of treatments,” he said.

The CAROL legislation annually gives $28 million for research to the National Heart, Lung and Blood Institute, which goes toward distinguishing between benign and life-threatening cases of heart valve disease.

There’s also $8 million earmarked annually for the CDC to fund a registry to give workers in health professions data on sudden cardiac events and fund an awareness campaign.

Barr said he hopes his efforts now can help other families and spare them “the same tragedy.”

“Carol was an awesome, awesome mom. She was a great lady. Her life was cut too short. … Through her memory, we’re going to we’re going to help people deal with heart valve disease in a better way,” he said.

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