Monday, July 22, 2024

Heart Disease in Women Goes Undiagnosed. Here’s Why

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In May 2019, six months after a 35-year-old Marian Dancy gave birth to her second child, she became strangely ill. Her symptoms started as general fatigue and swelling in her legs and ankles, which she chalked up to being a tired postpartum mom, always on her feet. But a few months later she started to experience unexpected vision loss, prompting Dancy to book an appointment with a physician.

“I went to the appointment and there was nothing detected,” Dancy says. She was simply told “to keep an eye on it,” she tells PS. In seeking out a second opinion, Dancy was given the same recommendation. But her symptoms continue to progress, and Dancy grew more concerned. In November 2019, she went to the emergency room complaining of severe muscle fatigue, shortness of breath, and trouble laying flat without feeling like she was suffocating.

The doctors diagnosed her with pneumonia, and sent her home that same day. But despite being treated for her supposed pneumonia, weeks later, she was experiencing the exact symptoms.

At that point, Dancy scheduled another appointment with a different physician. The new doctor gave Dancy an unexpected prognosis: heart failure.

Dancy was admitted to the hospital immediately, where she was diagnosed with peripartum cardiomyopathy, a rare form of heart disease that can occur during pregnancy or after delivery.

While Dancy’s experience may sound extreme, the sad truth is that her case of missed heart disease isn’t a rare occurrence. Heart disease is the leading cause of deaths in women in the United States. And despite women being more likely to experience heart failure, they’re less likely to receive life-saving treatment for it. What’s more, younger women, in particular, are under-diagnosed with heart disease as a result of unrecognized symptoms or faulty symptom interpretation.

In other words, the stats against Dancy were stacked from the start. But why is it that women’s heart disease consistently goes unnoticed?

Experts Featured in This Article:

Payal Kohli, MD, is a noninvasive and preventive cardiologist, founder and medical director of Cherry Creek Heart in Aurora, Colorado, and an associate adjunct professor in the cardiology division at Duke University.

Nikki Bart, MD, PhD, is a cardiologist and visiting academic at the Brigham and Women’s Hospital and Harvard Medical School.

Harmony Reynolds, MD, is the chair of the American Heart Association’s committee on cardiovascular disease and stroke in women and underrepresented populations and director of New York University Langone’s Sarah Ross Soter Center for Women’s Cardiovascular Research.

What Is Heart Disease?

In order to unpack why women get overlooked for symptoms of heart disease, it’s first important to break down what heart disease is, exactly.

There are many different types of heart disease. Payal Kohli, MD, a noninvasive and preventive cardiologist, founder and medical director of Cherry Creek Heart in Aurora, Colorado, and an associate adjunct professor in the cardiology division at Duke University, says the types can be grouped into three main categories.

First, there are “plumbing problems.” The heart is a muscle that’s working constantly, and thus needs constant blood flow. You can think of the blood vessels as little pipes that carry blood flow to our heart. Those pipes can get blocked up or clogged with a condition called atherosclerosis, in which cholesterol deposits develop in those arteries, preventing blood from getting to where it needs to, leading to a heart attack, says Dr. Kohli. “Think about it as your shower pipe all of a sudden completely stops and starts backing up,” she explains. “When experts talk about heart disease being the number one killer, we’re usually talking about these types of blockages causing heart attacks and strokes.”

The next type of heart disease isn’t an issue with the plumbing, but rather an issue with the pump. “The heart is a muscle pump that pumps blood all over our body. You can have something called congestive heart failure; the pump can fail because it’s not strong or it’s getting weak, or it can fail because it’s getting too stiff,” Dr. Kohli says. This type of heart disease is seen more commonly in women as they get older, as well as in diabetes patients.

The third kind of heart disease is an “electrical problem.” “So just like our house, our heart has electricity that runs through it that keeps it beating in a nice regular fashion,” Dr. Kohli says. A disturbance in your “electrical cables” can be triggered by a whole host of things — including age, alcohol, cigarettes, marijuana, high blood pressure, diabetes, and weight — and you can have an arrhythmia or a problem with the rhythm of your heartbeat.

Women most commonly experience plumbing problems, but they can experience any type of heart issue, says Dr. Kohli. But diagnosis presents its own challenges.

Why Does Heart Disease Get Overlooked in Women?

It’s no secret that medical bias plays a substantial role in how quickly, if at all, women are diagnosed with certain health conditions. And when it comes to heart disease that bias runs deep, particularly in how symptoms are assessed.

“What we understand to be typical symptoms of heart disease . . . those typical symptoms are actually what men experience. So that would be the kind of crushing elephant on your chest, pain down your arm, and shortness of breath,” explains cardiologist Nikki Bart, MD, PhD, visiting academic at the Brigham and Women’s Hospital and Harvard Medical School. “Women experience symptoms quite differently.”

In women, the signs of heart disease are often more subtle, including fatigue, dizziness, subtle shortness of breath, and heart palpitations.

Because of these subtle differences in presentation, women’s symptoms tend to get overlooked. In fact, for decades symptoms common to women were considered “atypical” by doctors, says Harmony Reynolds, MD, chair of the American Heart Association’s committee on cardiovascular disease and stroke in women and underrepresented populations and director of New York University Langone’s Sarah Ross Soter Center for Women’s Cardiovascular Research.

Changes are only just now being made to educate healthcare providers on women’s heart disease symptoms, specifically. “The latest chest pain guidelines, led by a female cardiologist, tell us not to use the word ‘atypical’ for chest pain any longer because it’s perpetuating bias,” Dr. Reynolds says. But change often happens slowly, so cases are still flying under the radar.

Primary care doctors in particular miss about one-third of heart failure diagnoses, and are especially likely to miss heart failure symptoms in women, Black adults, and patients with lower incomes, according to a study in Circulation: Heart Failure.

Heart disease symptoms may also be dismissed by patients and providers due to assumptions made about the life stages a woman may be in, Dr. Bart tells PS. “Women at risk of heart disease are often in the middle of their life and have to juggle a lot of family work, aging parents, so they might just put their fatigue down to being really busy,” she says. Dizziness or shortness of breath may also be cast off as general tiredness, while palpitations often get put down to anxiety, she adds.

Additionally, clinical trials are a crucial part of the diagnostic process and in understanding and improving health outcomes — yet women are “grossly underrepresented” in clinical trials for heart disease, Dr. Kohli says. “We usually have three men for every woman in clinical trials,” she tells PS.

“We also know that women are a little different biologically because they have a reproductive life cycle, which means that their cardiac risk varies during the course of their life based on whether they’re pre menopausal, menopausal, postmenopausal, and whether they’re carrying a pregnancy or not,” Dr. Kohli says. These are all things that can affect your heart and blood vessels, and also your heart disease risk profile. But those complexities are sparsely explored in research.

On top of that, education remains biased. Even in CPR training, oftentimes the mannequins used all look like men and not women, says Dr. Bart. This may seem like a small thing, but it can subconsciously influence people to overlook cardiac arrests among women. It also leaves bystanders and clinicians ill informed about the necessary techniques to save that person. A 2024 study out of Duke University analyzing data about more than 309,000 cases of cardiac arrest from 2013-2019 showed that women were 14 percent less likely to receive bystander CPR and defibrillation than men.

How Women Can Protect Themselves From Heart Disease

“We as women, we have a gender gap in everything — how much we get paid, how many promotions we get. And now we even have a gender gap in heart disease detection and management,” Dr. Kohli says. That’s why patient and provider advocacy remains crucial.

Dr. Reynolds in particular remains hopeful about the future, having seen an improvement around research centered around equity in diagnosis and treatment for women. Some of this research exposes the biases in the medical field and over time, will influence physicians and other healthcare providers to listen more actively to patients, she tells PS. Dr. Reynolds has also seen a greater investment in learning about and educating on heart disease risk factors from specialists outside the heart health field, including ob-gyns, dentists, and PCPs.

Calcium scores, which involve an x-ray of the heart to look for calcium deposits or plaque, as well as the genetic risk score, which uses your genetics to determine your risk factor for heart disease, are also crucial methods of innovation, Dr. Kohli says.

But there’s also a lot you can do on the preventative side to reduce your risk early on, including certain lifestyle choices like avoiding smoking, monitoring high blood pressure, eating a heart healthy diet, managing weight gain, minimizing your alcohol, prioritizing sleep, and focusing on stress management.

The latter, in addition to regimented medications, has been crucial for Dancy in keeping her heart disease symptoms at bay. “Stress is a very huge trigger for me in my heart health,” she tells PS. Finding a therapist to release stress with and process overwhelming emotions is something she recommends consistently as a preventative measure.

Dr. Kohli, on the other hand, can’t stress enough the importance of testing. There are three in particular that she recommends. The first is a lipid panel, which measures cholesterol; you should start getting this in your 20s. The second is the hemoglobin A1C test, which tells us our blood sugar control and is recommended for adults age 45 and older.

And then once in your lifetime, you should get a Lipoprotein-A test to measure the levels of Lp(a) in your bloodstream. A high level of Lp(a) can signal that you have a high risk for heart disease and stroke, and you only need the test once — ever — because it doesn’t change a lot over the course of your lifetime. The test isn’t commonly talked about or as well-known. But if the results of this test indicate you have an elevated risk, it can “put a red flag on you” as a patient, Dr. Kohli says. “I as your doctor now know, I need to treat you more aggressively.” So this is something you can and should ask your healthcare provider about, she tells PS.

In general, when it comes to heart disease, asking for more isn’t something that you should ever be afraid to do, Dr. Kohli says. After all, if Dancy hadn’t asked for another doctor, another exam, she might not be here to share her story with others today.

Alexis Jones is the senior health and fitness editor at PS. Her passions and areas of expertise include women’s health and fitness, mental health, racial and ethnic disparities in healthcare, and chronic conditions. Prior to joining PS, she was the senior editor at Health magazine. Her other bylines can be found at Women’s Health, Prevention, Marie Claire, and more.



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