Hypertrophic obstructive cardiomyopathy (HOCM) is the most common genetic heart disease, affecting about 1 in every 500 people, according to the American Heart Association (AHA). In people with HOCM, genetic variants cause the heart’s walls to thicken and stiffen, blocking blood from flowing freely from the left ventricle to the aorta. This, in turn, results in shortness of breath and chest pain (especially during physical activity), abnormal heart rhythms, lightheadedness, dizziness, and fainting, and can worsen over time.
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If a parent has HOCM, offspring have a 50% chance of inheriting it. That means knowing your family’s heart health history is crucial: If your doctor is aware that you have relatives with HOCM, they can “screen family members early on, before they get sick or have any cardiac complications” using EKG and echocardiogram, says Dr. Ali Nsair, co-director of the Hypertrophic Cardiomyopathy Clinic at UCLA Health.
About 60% of the time, genetic testing can identify a specific change in a gene that causes HOCM. Even if you (or your kids) test negative for the particular genetic variant your parent with HOCM has, you can still be screened every few years with EKGs, echocardiograms, and visits to a cardiologist to make sure complications haven’t popped up, Nsair says.
And it’s not only HOCM that can cluster in families. “A lot of what ails us is in some sense heritable,” says Dr. Daniele Massera, associate director of the Hypertrophic Cardiomyopathy Program at NYU Langone Health. “Whatever affects your family members might directly affect you.” Other heart conditions, like familial hypercholesterolemia (high cholesterol) and high lipoprotein (a) (proteins and fats that carry cholesterol), can be inherited, and a family history of heart disease that isn’t genetic puts you at higher risk, too.
But no single risk factor—including genetics—is a guarantee that heart disease will develop down the line: “For me, the most important reason to know your family history is prevention,” says Dr. Svati Shah, a member of the American Heart Association’s National Board of Directors and director of the Duke Adult Cardiovascular Genetics Clinic. If you know you have an increased risk for heart disease due to your genes or family history, which you can’t control, you can take heart-healthy steps to improve the lifestyle factors you can control, such as getting plenty of sleep, eating a balanced diet, and staying active, according to the AHA.
To make sure you get access to the testing, treatment, and information on lifestyle changes that can help you avoid or delay inherited heart health complications, it’s important to stay on top of your family’s medical history. Here’s how to have those conversations with honesty and compassion while still getting the potentially life-saving answers you need.
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Start with broad questions
You might open the conversation with a question as simple as “Do you have any kind of heart disease?” or as general as: “Have you ever had any chest pain?” Shah suggests.
If your relative isn’t entirely sure about their diagnosis or past procedures, consider asking if a doctor has ever told them they had any of the following, according to the Centers for Disease Control and Prevention (CDC):
- Coronary artery disease or atherosclerosis
- Heart attack
- Arrhythmia
- Atrial fibrillation
- Cardiomyopathy
- Heart failure
- Aortic aneurysm
- Stroke
Also ask if they have a pacemaker or have ever had heart bypass surgery. If they’ve given birth, Shah suggests adding: “Did anything happen [to your heart] when you had your babies? Did you get really high blood pressure?” And whenever possible, ask what age they were when they experienced these conditions or complications for the first time, according to the CDC.
The details might get fuzzier as you go back generations. “Often people say [things like], ‘My dad died at 47 from a heart attack,’ but it’s actually that they didn’t wake up from sleep, and it may not have been a heart attack,” Massera says.
Try to get as many details as you can, because those specifics can help your doctor determine the best next steps for you. For example, you might need different testing if your 47-year-old father died of sudden cardiac arrest (when the heart suddenly stops beating) rather than a heart attack (when an artery to the heart is blocked). “To distinguish between the two is really critical: A heart attack is common, but if we identify sudden cardiac death as the real mechanism, then we’re homing in on a more narrow group of conditions that will require testing that you wouldn’t necessarily do if you’re talking about a heart attack,” Massera says.
While heart attacks, strokes, and sudden cardiac death might stand out the most in your relatives’ memories, make sure to ask about heart disease risk factors too, like high blood pressure, high cholesterol, and diabetes. “There is a strong predictor among those factors that can lead to heart disease and heart failure,” Massera says.
Talk to three generations on both sides of your family
Ideally, aim to include three generations on both sides of your family in your discussions about heart health: your grandparents, your parents and their siblings, and your siblings.
“Backwards more than three generations, people don’t really know what happened to those relatives,” Shah says. But any information you can collect is still better than nothing, especially if you continue to gather knowledge over time. “[Learn] as much as you can, and it can be over the course of many years that you fill in the details,” she says.
If you or your siblings have children, note any known heart health information about them, too, per the CDC.
Be gentle
These discussions may not go as well if your brother feels interrogated or your mother feels blamed. “These can be really laden conversations,” Shah says. “Especially when you start talking about weight, high cholesterol, blood pressure—people can get sensitive about that.”
If a family member remains standoffish, don’t press: “If that person isn’t ready, it’s OK, circle back to it,” Shah says. Your relatives might feel more comfortable in a group setting. “Sometimes one on one, people ask: ‘Why are you calling me? Why are you worried about my health? Why aren’t you worried about other people’s health?’” Group conversations have the added benefit of helping to nudge everyone’s memory in the right direction, too. “Sometimes one person remembers one thing, another person remembers another thing, but if you spoke with each one independently, you wouldn’t have made the connection,” Shah says.
These conversations don’t have to be done in person, but face-to-face discussions allow you to pick up on a relative’s body language more easily and change the subject if you can tell they’re uncomfortable.
Record the information somewhere you can access it easily
You can use digital tools like the Surgeon General’s My Family Health Portrait or the Global Alliance for Genomics and Health’s Family History Toolkit to record and store your family’s heart health history.
Don’t feel pressured to use software: Typing notes into your smartphone or jotting them down on paper is fine, too. As long as it’s a system that works for you and you know where the information is, you’ll be less likely to forget any details when you’re actually sitting in front of your doctor.
“I love it when patients come in with a printout,” Massera says. He makes sure to devote plenty of time to walk through all of a patient’s relatives and their relevant health history, but recognizes a typical primary care doctor might not have that luxury. “You can’t do this if you see a patient in five minutes,” he says. If you feel like your doctor isn’t giving you enough time to cover your family history thoroughly, it’s OK to ask for a longer appointment to address your concerns, he adds.
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Report back to your doctor
Simply knowing your family’s heart health history isn’t enough to prevent your own heart issues. Sharing what you’ve learned with your doctor is key to determining the screenings, treatment, or lifestyle changes that might benefit you.
To that end, share “broadly” with your primary care doctor once you’ve asked your family about their heart health, Nsair says. Your doctor will dig deeper into the information that’s most relevant to your individual health, but it’s always better to provide too much than too little.
A history of heart failure, heart rhythm disorders, stroke, and sudden death, especially in relatives younger than 40 or 50, will likely prompt your primary care doctor to refer you to a cardiologist. That person or your primary care doctor can help you identify modifiable risk factors that you can change, such as quitting smoking, adopting a balanced diet, starting an exercise routine, and maintaining a healthy weight.
You won’t have to do this every time you visit the doctor: Once you’ve shared your family heart health history, that information is entered into your medical records, so anyone who is a part of your care team will have access to the same details.
Chat again whenever big changes occur
Your family’s heart health will continue to change over time—after all, many heart issues, including HOCM, are more common in middle age—so it’s hard to say exactly how often to ask your relatives about their heart health.
In general, it’s a good idea to collect more information whenever a family member experiences a major heart-related health issue, like a sudden death, cardiac arrest, or having a defibrillator implanted. “This is not a conversation you need to have every year. But every few years, reassess,” Shah advises.
Remember, these conversations may be challenging, but they’re empowering you with the information you need to live well for longer. “Genetics is not destiny. There’s a saying that genetics loads the gun, but the environment pulls the trigger,” Shah says. “You have control over this.”