The story of SCAD underscores how much doctors still don’t understand, including about heart disease in women. Katherine Leon was 38 and living in Alexandria, Va., when she gave birth to her second son in 2003. She was discharged from the hospital, but instead of getting better, she recalls, she kept feeling “worse and worse and worse.” Five weeks after she had her child, Ms. Leon’s husband came back early from work and found her barely able to breathe. “I hate to use the word panic, because so many people say if it’s a woman she is just having a panic attack, but I was terrified,” she said. Her husband called 911, and she was taken to the emergency room where, after a few tests, the physicians told her there was nothing wrong with her. She went home but continued to have bouts of chest pain and kept laboring to breathe. Things came to a head several days later, she said, when she developed “that impending doom feeling.” Reluctantly, she called 911 again. Things went differently in the emergency room this time. She remembers thinking at the time: “Are you kidding me? I have two babies and I was going to do the whole mom thing, with playgroups and a jog stroller, and take classes. I may have tried one cigarette in my life. I didn’t have cholesterol issues. I didn’t have blood pressure issues.” She received what at the time was considered one of the rarest possible diagnoses: spontaneous coronary artery dissection, or SCAD. The condition occurs when one of the arteries supplying the heart with oxygen spontaneously tears open, leading to a heart attack that can sometimes be fatal. It occurs most often in women, and can be exacerbated by pregnancy. But at the time, few doctors knew that SCAD even existed, or knew much about it. “You are never going to meet anyone else who has this,” Ms. Leon remembers one doctor telling her. Another told her, “You need to move on and enjoy your children.” Her doctors also told her that the only thing she could do to avoid SCAD in the future was to never get pregnant again. But seeking to learn more about the disease that had almost taken her life, she went online and started to find other women with similar symptoms around the world. In 2009, Ms. Leon went to the WomenHeart Science and Leadership Symposium at the Mayo Clinic, where she met Dr. Sharonne N. Hayes, a professor of cardiovascular medicine at Mayo. At that time, the largest study on SCAD included 43 patients. “I walked up to Dr. Hayes and told her we had 70 people, and we wanted research,” Ms. Leon recalled. “She was like, ‘Wow.’” “Everything I learned about SCAD in my medical training was wrong,” Dr. Hayes said. By 2010, with the help of Dr. Hayes, and subsequently SCAD Research Inc., an organization founded by Bob Alico, who lost his wife to SCAD, Dr. Hayes devised an innovative way to do research, using online networks of far-flung patients and analyzing genetic and clinical data. “We never imagined there would be 1,000 female patients in our virtual registry,” Dr. Hayes said. That fortuitous meeting between Ms. Leon and Dr. Hayes has helped transform SCAD from being an unknown, unrecognized condition to something all physicians are taught about during medical school and in later training. SCAD is now recognized as the most common cause of heart attacks in women under 40. Why did it take so long for physicians and researchers to recognize SCAD? The most important reason might have been that the condition predominantly affects women. “We listen less well to women,” said Dr. Hayes. “We are much more likely to associate their symptoms with psychological causes.” A heart attack is more likely to be fatal in a young woman than a young man, perhaps because women’s cardiac symptoms are more often misattributed to anxiety or depression than men’s. The bias that many women feel they face in the clinic or the emergency room has led some, like Ms. Leon, to take action and advocate for themselves and others. “People are activated by injustice, by unanswered questions,” said Dr. Hayes She offers this advice: “Don’t walk out of a doctor’s office without answers. Find a doctor who is committed to listening to you and does not think they know everything about anything.” The story of SCAD underscores how much we doctors still don’t understand, including about heart disease in women. Too often those in the medical profession downplay women’s complaints, telling them nothing is wrong. Women are often expected to take care of others but too often neglect themselves. Indeed, women take much longer to seek medical care for a heart attack than men. As we embrace new technologies to peer ever deeper inside the human body to find answers, perhaps the better route might be simply to attend to the patient in front of us. Often what we need to do is listen. Source
