HAccording to the American Heart Association (AHA), hypertrophic obstructive cardiomyopathy (HOCM) is the most common inherited heart disease, affecting approximately 1 in 500 people. In patients with HOCM, a genetic mutation causes the walls of the heart to become thick and stiff, preventing the free flow of blood from the left ventricle to the aorta. This can cause shortness of breath, chest pain (especially during physical activity), abnormal heart rhythms, lightheadedness, dizziness, and fainting, which can get worse over time.

If a parent has HOCM, offspring have a 50% chance of inheriting it. This means it’s important to know your family’s heart health history. If doctors know that you have a relative with HOCM, they can use an electrocardiogram or echocardiogram to “screen your family early, before they get sick or develop heart complications,” Dr. To tell. Ali Nsaia, co-director of the Hypertrophic Cardiomyopathy Clinic at UCLA Health.

Genetic testing can identify specific changes in genes that cause HOCM about 60% of the time. Even if you (or your child) test negative for the specific genetic mutation that your parent with HOCM has, you should be screened every few years with an electrocardiogram, echocardiogram, and visit to a cardiologist. You can check to see if any complications are occurring, Nsair says. Say.

And it’s not just HOCM that can cause clusters within families. “A lot of what afflicts us is genetic in some sense,” says Dr. Daniele Masella, associate director of the Hypertrophic Cardiomyopathy Program at NYU Langone Health. “Anything that affects your family can also directly affect you,” including familial hypercholesterolemia (high cholesterol) and high lipoprotein(a) (proteins and fats that carry cholesterol). , other heart conditions can also be inherited, and a family history of heart disease that is not genetic also increases risk.

However, no single risk factor, including genetics, guarantees that you will develop heart disease in the future. “For me, the most important reason to know your family history is prevention,” says Dr. Swati Shah, a member of the American Heart Association. Association National Board of Directors and Director of the Duke Adult Cardiovascular Genetics Clinic. If you know you’re at increased risk for heart disease because of genes or family history that are out of your control, you can take heart-healthy steps to improve lifestyle factors. can According to the AHA, it’s important to take control by getting enough sleep, eating a balanced diet, and staying active.

It’s important to stay informed about your family’s medical history to ensure you have information about tests, treatments, and lifestyle changes that can help avoid or delay complications from inherited heart conditions. Here’s how to have the conversation with honesty and compassion while getting the potentially life-saving answers you need.

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Start with broad questions

You can start the conversation with a simple question like, “Do you have any heart problems?” Or you can ask general questions like, “Have you ever had chest pain?” Shah suggests.

According to the U.S. Centers for Disease Control and Prevention (CDC), if your relative is unsure about their diagnosis or past treatments, consider asking them if their doctor has ever told them they have any of the following: please.

We will also ask if you use a pacemaker or have had heart bypass surgery. If you give birth, Shah suggests adding: [to your heart] What about when you have a baby? Did you really have high blood pressure? ” If possible, ask how old you were when you first experienced these symptoms or complications, according to the CDC.

The further back you go back in generations, the more fuzzy the details can become. “People often say, [things like]”My father died of a heart attack at the age of 47, but the fact is they never woke up from his sleep. It may not have been a heart attack,” Masela said.

Try to get as many details as possible to help your doctor determine the best next steps for you. For example, if your 47-year-old father died from sudden cardiac arrest (when the heart suddenly stops) rather than from a heart attack (when the artery to the heart becomes clogged), another test may be needed. . “It’s very important to differentiate between the two. Heart attacks are common, but identifying sudden cardiac death as the true mechanism requires testing that would not normally be done. You’re going to focus on a narrower group of symptoms.” If you’re talking about a heart attack, you definitely need to do that,” Masella says.

Heart attack, stroke, and sudden cardiac death may be most prominent in your relative’s memory, but be sure to also ask about risk factors for heart disease, such as high blood pressure, high cholesterol, and diabetes. “Some of the factors that can cause heart disease and heart failure are strong predictors,” Masella says.

Discuss with three generations on both sides of the family

Ideally, discussions about heart health should aim to involve three generations on both sides of the family: grandparents, parents and their siblings, and siblings.

“People don’t really know what happened to their relatives more than three generations ago,” Shah said. But any information you can gather is better than none, especially if you continue to gather knowledge over time. “[Learn] It can take years to enter as much information and details as you can,” she says.

If you or your siblings have children, also note any known heart health information about them, according to the CDC.

calm

These discussions may not go well if the sibling feels questioned or the mother feels blamed. “These can be very intense conversations,” Shah says. “Especially when you start talking about weight, high cholesterol and blood pressure, people can be sensitive to that.”

If a family member misbehaves, don’t push them. “If the person isn’t ready, that’s okay. Just roll up and go back,” Shah says. Your relative may feel more comfortable in a group setting. “Sometimes I get asked one-on-one, ‘Why are you calling?’ myself? Why are you worried? my health? Group conversations also have the advantage of steering everyone’s memory in the right direction. “Sometimes one person remembers one thing and another person remembers something else, but if you had talked to each person individually, you wouldn’t have made the connection,” Shah said. says.

These conversations don’t have to happen in person, but doing so allows you to more easily understand your relative’s body language and change the subject if you notice that the other person is feeling uncomfortable.

Record information in an easily accessible place

You can record and preserve your family’s heart health history using digital tools such as the Surgeon General’s My Family Health Portrait and the Global Alliance for Genomics and Health’s Family History Toolkit.

Don’t feel pressured to use the software. It doesn’t matter if you type your notes on your smartphone or write them down on paper. As long as it’s a system that works for you and you know where the information is, you’re less likely to forget details when you’re actually sitting in front of the doctor.

“I love it when patients come in with a printout,” Masella says. He makes sure to spend enough time examining all of the patient’s relatives and their relevant medical history, but recognizes that a typical primary care physician may not have that luxury. . “This is not possible if you see a patient within five minutes,” he says. If you feel your doctor won’t give you enough time to thoroughly explain your family history, it’s okay to ask for more time to address your concerns, he added.

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Please report to your doctor

Knowing your family’s heart health is not enough to prevent your own heart problems. Sharing what you learn with your doctor is key to determining tests, treatments, or lifestyle changes that may benefit you.

To that end, ask your family about their heart health and share it “widely” with your doctor, Nsaia says. Your doctor will look closely at the information most relevant to your personal health, and it’s better to provide too much information than too little.

Your GP will likely refer you to a cardiologist, especially if you have a relative under the age of 40 or 50 with a history of heart failure, heart rhythm disorders, stroke, or sudden death. That person or your doctor can help you identify modifiable risk factors that you can change on your own, such as quitting smoking, adopting a balanced diet, starting an exercise routine, and maintaining a healthy weight.

You don’t have to do this every time you visit your doctor. When you share your family’s heart health history, that information is entered into your medical record so any member of your health care team can access it. Same details.

Chat again every time a big change happens

Your family’s heart health will continue to change over time. After all, many heart problems, including HOCM, are more common in middle age. So it’s difficult to say exactly how often you should ask your relatives about their heart health.

In general, it is a good idea to gather more information if your family has experienced a serious heart-related health problem, such as sudden death, cardiac arrest, or defibrillator implantation. “This isn’t a conversation you need to have every year, but reevaluate every few years,” advises Shah.

Remember, these conversations may be difficult, but they can give you the information you need to live longer and better. “Heredity is not destiny. There’s a saying that goes, ‘Heredity influences guns, but environment triggers them,'” Shah says. “You are in control of this.”