At first, Kathy Kastan's symptoms just seemed weird. An avid athlete, she would get oddly tired, struggle to catch her breath, and wince at the pain in her shoulder and back when she exercised. She tried shaking it off, but the problems kept nagging her, so the 41-year-old consulted a cardiologist.
"He said, 'You're healthy as a horse. I never want to see you again,' " said Kastan, who lives in Cordova, Tenn.
"I was one of the lucky ones. I escaped an actual heart attack," said Kathy Kastan, 41, of her initially misdiagnosed heart disease.
(Troy Glasgow For The Washington Post)
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But she got worse -- so bad that crushing chest pain knocked her down every time she tried to work out. Finally, she went to specialists who discovered that Kastan did have serious heart disease -- just not the familiar, clogged-up-artery kind. Instead, her arteries would mysteriously spasm, strangling the blood flow to her heart muscle.
"It's amazing how many women have been through this. They have these symptoms, and nobody can figure out what's wrong," she said. "I was one of the lucky ones. I escaped an actual heart attack."
Doctors are starting to realize that many women probably have Kastan's kind of heart disease, as well as other forms that differ in essential ways from the well-known pattern that strikes most men. This new understanding -- that heart disease may be a fundamentally different disease in many women -- has far-reaching implications for medicine's ability to defend women against the nation's No. 1 killer. Contrary to persistent misconceptions, heart disease claims the lives of more women than men.
"The whole disease is poorly understood in women, from the expression of the symptoms all the way down to some of the basic mechanisms," said Carl J. Pepine, a cardiologist at University of Florida's College of Medicine in Gainesville. "The disease has a very broad spectrum, and more men are at one side and more women are at the other side."
Instead of one main blockage, arteries in many women go into spasm or have smaller, easily missed buildups along their entire lengths, which can be just as dangerous as one big one. And often the problems lie not in the major arteries that nourish the heart muscle but in the frequently overlooked smaller branches.
These differences, frequently found in younger women, could help explain why the symptoms are often so different than in men, why women are often misdiagnosed -- or never diagnosed -- why they commonly are not treated until much later, and why women are more likely to die from their heart disease even when they are treated. The standard tests, drugs and procedures simply may not work as well for many women.
"We are just now starting to describe this really for the first time," said C. Noel Bairey Merz, a heart expert at Cedars-Sinai Medical Center in Los Angeles. "We hear about how women are treated less aggressively than men, and how they eventually have worse heart attacks and are more likely to die with their heart disease. We can see how this could culminate in that way."
This new understanding is emerging only now because heart disease research has traditionally focused almost exclusively on men. Experts assumed that women's tendency to fare so poorly was the result of not being treated as early or as thoroughly as men.
"In the past, we had the assumption of equality -- that everything was equal between the genders and there were no differences," said George Sopko of the National Heart, Lung, and Blood Institute. "Now that's beginning to unravel."
Experts stress that most women who get heart disease are struck by the same form that hits men, which can be prevented and treated the same way. But a new generation of research is urgently needed, Bairey Merz and other experts say, to better understand the other ways women's arteries start to become diseased, zero in on the most important risk factors, develop new diagnostic tests and find treatments tailored specifically for women.
"Men and women are very similar, but like many other areas of health, when we've bothered to do the research there are differences that sometimes can have clinically significant importance," Bairey Merz said.
One of the main sources of this new understanding is the federally funded Women's Ischemia Syndrome Evaluation (WISE) study, which is tracking about 1,000 women in Florida, Pennsylvania and Alabama who have chest pain or other symptoms but who mostly seem fine on standard tests.