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 trying to find out more about the disease that nearly cost her life, she went online and started finding other women with similar symptoms around the world.
In 2009, Ms. Leon participated in the WomenHeart Symposium on Science and Leadership at the Mayo Clinic, where she met with Dr. Sharonne N. Hayes, Professor of Cardiovascular Medicine in Mayo. At that time, the largest study on SCAD included 43 patients. "I approached Dr. Hayes and told him we had 70 people and we wanted to do some research," said Ms. Leon. "She was like," Wow. ""
"Everything I learned about SCAD during my medical training was wrong," said Dr. Hayes.
In 2010, with the help of Dr. Hayes, then SCAD Research Inc., an organization founded by Bob Alico, who lost his wife to SCAD, Dr. Hayes devised a innovative way research using online networks of distant patients and analyzing genetic and clinical data. "We never imagined that our virtual registry would contain 1,000 patients," said Dr. Hayes.
The chance meeting between Dr. Leon and Dr. Hayes helped transform the SCAD status of an unknown and unrecognized disease into a subject that all physicians learn while studying at the faculty of medicine. The SCAD is now recognized as the most common cause of heart attack in women under 40 years.
Why did doctors and researchers take so long to recognize SCAD? The most important reason could have been that the disease mainly affects women. "We do not listen as well to women," said Dr. Hayes. "We are much more likely to associate their symptoms with psychological causes." A heart attack is more likely fatal in a young woman than a young man, perhaps because women's heart symptoms are more often attributed to anxiety or depression that men.
The prejudices that many women feel at the clinic or at the emergency have led some, like Ms. Leon, to act and defend their interests and those of others. "People are driven by injustice, by unanswered questions," said Dr. Hayes
She offers this advice: "Do not leave a doctor's office without answers. Find a doctor who is committed to listening to you and who does not think you know anything about it. "
The story of SCAD underscores how we, the doctors, still do not understand, especially with regard to heart disease in women. Too often, health professionals downplay women's complaints and say nothing to them. Women are often supposed to take care of others but too often neglect themselves. Indeed, women take much longer seek medical attention for a heart attack than men. As we adopt new technologies to look deeper and deeper into the human body to find answers, perhaps the best way is simply to take care of the patient in front of us. Often we have to listen.