Patient Becomes Advocate and Teaches Doctors About Heart Attacks

By In the Loop • February 12, 2019

At 38, Katherine Leon wasn't supposed to have a heart attack, which is why it was first overlooked. Sharing her story with doctors shed light on a type of heart attack that was once virtually unknown.

Katherine Leon could hardly breathe. The then 38-year-old had recently given birth to her second son. But one month after delivery she was feeling worse instead of better, experiencing chest pain and shortness of breath. "I hate to use the word panic, because so many people say if it's a woman, she is just having a panic attack," she tells The New York Times. "But I was terrified." At the emergency department near her home in Alexandria, Virginia, doctors ran a few tests, told Katherine she was fine, and sent her home.

Katherine didn't look like a typical heart attack patient. So doctors didn't see a heart attack patient. Fortunately, when she returned to the hospital a few days later, a different doctor took charge of her case. "There was a young woman doctor who took care of me," Katherine tells the Times. "Her reaction was totally different. She knew that there was something definitely wrong."

That doctor was right. Katherine had experienced a spontaneous coronary artery dissection (SCAD), a type of heart attack that doctors believed to be rare and knew little, if anything, about. Katherine would go on to help change that. After recovering, she began researching the condition.

Though she'd been told she'd never meet anyone else with the condition, Katherine soon discovered a community of survivors online. She realized the condition wasn't as rare as she'd been told, and she wanted doctors to know that, too. So in 2009, Katherine attended the WomenHeart Science and Leadership Symposium at Mayo Clinic, where she shared her story — and her connection to an online community of 70 survivors — with cardiologist Sharonne Hayes, M.D. That meeting would help change what doctors know about the condition that could have cost Katherine her life.

"Everything I learned about SCAD in my medical training was wrong," Dr. Hayes says. The newspaper reports that the "fortuitous meeting" between doctor and patient "has helped transform SCAD from being an unknown, unrecognized condition," to being recognized as the most common cause of heart attacks in relatively young, healthy women. Much of that new understanding has come courtesy of research spearheaded by Dr. Hayes, who created a "Virtual" Multicenter Spontaneous Coronary Artery Dissection (SCAD) Registry to collect and analyze genetic and clinical data from SCAD patients.

While progress has been made, there's still much to learn about the condition, which most often affects women who have few risk factors for heart disease. "Even with what we have learned over the past several years, SCAD continues to be misdiagnosed and underdiagnosed," Dr. Hayes tells Mayo Clinic News Network. "And we know it is not rare. It is the No. 1 cause of heart attack during pregnancy and in the period right after giving birth, and the No. 1 cause of heart attack in women under age 50."

Some of the problem may lie in the fact that most patients are women. "We listen less well to women," Dr. Hayes tells the Times. "We are much more likely to associate their symptoms with psychological causes." To combat that, "Don't walk out of a doctor's office without answers," Dr. Hayes says. "Find a doctor who is committed to listening to you and does not think they know everything about anything."

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