It’s important to remember that if you have hypertrophic cardiomyopathy (HCM), you were born with it—you didn’t do anything wrong.  

Still it’s normal to worry. You may feel anger or disbelief at first. But if you start to notice that fears of having this genetic condition—and how it might affect your heart and health – keep you up at night or are causing a lot of distress, talk with your care team.

Finding ways to keep a positive outlook and manage stress with calming relaxation exercises also can help.

As with any health issues, you are your best advocate. If something doesn’t quite feel right or you’re feeling unusually down for an extended period, talk with your doctor or nurse.

The good news is that most people have no or minimal symptoms throughout their life and even for those with symptoms, most people with HCM can lead a normal life with treatment and follow-up.  

Patient Voices: Living With HCM

For many people living with HCM, talking to others with the condition to share stories and advice is an important step.

Hear from people with HCM as they talk about their experiences and explain the importance of:

• Screening family members: It’s not always easy to have conversations about conditions that are passed down in families, but it’s really important to make sure that treatment for HCM is started as early as possible if someone you love has it. Remember, HCM can look and feel different – even among people who are related.

• Staying upbeat : Find ways to keep a positive outlook and manage stress and feelings of depression. The right mindset can help motivate you to take the steps to care for yourself, ease your symptoms, and make you feel better. 

• Building trust: Opening up to your health care team can help tailor your treatment plan. Also, knowing the risks and benefits of each treatment you’re offered will help ensure you pick the right treatment for you. 

• Living your life: Talk about what you value with your care team so you can find ways to stay connected with the things that matter to you.

Patient Voices: Living With HCM

For many people living with HCM, talking to others with the condition to share stories and advice is an important step.

Hear from people with HCM as they talk about their experiences and explain the importance of:

• Screening family members: It’s not always easy to have conversations about conditions that are passed down in families, but it’s really important to make sure that treatment for HCM is started as early as possible if someone you love has it. Remember, HCM can look and feel different – even among people who are related.

• Staying upbeat : Find ways to keep a positive outlook and manage stress and feelings of depression. The right mindset can help motivate you to take the steps to care for yourself, ease your symptoms, and make you feel better. 

• Building trust: Opening up to your health care team can help tailor your treatment plan. Also, knowing the risks and benefits of each treatment you’re offered will help ensure you pick the right treatment for you. 

• Living your life: Talk about what you value with your care team so you can find ways to stay connected with the things that matter to you.

Exercise and Sports

Exercise has many health benefits. For most people living with hypertrophic cardiomyopathy (HCM), light or moderate exercise is good for overall health.

Moderate exercise—a brisk walk for example—has not been shown to trigger dangerous abnormal heart rhythms, according to new evidence.

So talk to your care team about an exercise program that keeps you active and safe. Ask whether you should track your heart rate when exercising.

Taking part in more vigorous exercise or competitive sports may be considered. But before doing so, you should have an in-depth discussion with your care team about your specific situation and the risks involved.

Healthy Habits

Maintaining a healthy lifestyle can help keep your heart strong. It can also help you feel better and give you more energy. Besides finding a safe way to stay active, healthy habits include:

• Eating healthy: Choose heart-healthy foods, including a variety of fresh fruits and vegetables, whole grains, and lean meats.
• Managing stress: Find healthy ways to lower stress (deep breathing, listening to music, journaling).
• Watching your alcohol intake: Ask what amount of alcohol is safe. Too much can trigger irregular heart rhythms and make blood flow in the heart worse.
• Keeping up with follow-up appointments and heart tests: Together, these will help you and your care team know if more needs to be done to manage your condition and avoid complications. Remember to ask for a flu shot each year.

It also can be helpful to:

• Talk with other people who have hypertrophic cardiomyopathy
• Know that in most cases, people can continue work, but if your job involves a lot of strenuous activity and lifting, you should discuss this with your care team
• Find safe ways to stay active
• Ask about vigorous physical activity, including sex; many people are hesitant to talk about this, but you may also be avoiding intimacy, which can affect your relationships
• Remember that you have a whole team behind you to answer questions and help put your mind at ease; you will need ongoing follow-up and tests, but that can also provide reassurance that you are being closely followed
• Talk openly with your family about the condition, as well as about when and how to screen for it in others
• Look into meeting with a genetic counselor to talk about concerns of genetic testing: How might results affect health insurance or life insurance?
• Remember that information on the Internet is not always accurate; talk with your care team about your condition and any worries you have.

Pregnancy

Pregnancy is possible for most women with hypertrophic cardiomyopathy (HCM), but several issues should be discussed with the care team.

Those concerns include 1) risks to the mother with HCM in carrying a pregnancy, and 2) risks that the child might inherit the genetic mutation for the condition. 

You should make sure your obstetrician knows about your condition and coordinates your pregnancy and delivery with your cardiologist. 

Medications, including beta blockers, calcium channel blockers, anti-arrhythmic drugs, and blood thinners can ease symptoms and prevent complications. These medications can help:

• Relax the heart muscle, letting it fill and pump better
• Steady or slow your heart rate or rhythm
• Prevent blood clots from forming
• Reduce chest pain

Remember that your medications work only if you take them as prescribed. Some medicines will be started at a low dose (amount), and higher doses may be needed over time.

Work together with your care team to decide on the best treatment path for you. In most cases, medications, and lifestyle changes are all the treatment you need to support your overall health. 

Surgery and Procedures

Surgeries and procedures can be used to remove or destroy thickened areas of the heart or to maintain normal heart rhythm.

These are generally recommended if blood flow out of the heart is slowed (obstructive hypertrophic cardiomyopathy) or if you are having symptoms despite being on medications.

These therapies are best done at medical centers with experienced teams with special training in hypertrophic cardiomyopathy (HCM).  

• Septal myectomy: Open-heart surgery to remove part of the thickened wall of the heart (septum) and improve blood flow. Valve repair or replacement may also be recommended.
• Alcohol septal ablation (or nonsurgical septal reduction therapy): A thin catheter is carefully threaded into the artery and alcohol is injected to kill muscle cells in the thickened part of the heart.
• Implantable cardioverter defibrillator (ICD): A small device is placed in the chest or abdomen that help detect and control irregular heartbeats. The device uses electrical shocks to restore a normal rhythm. ICDs can prevent sudden cardiac death.
• Heart transplant may be done in rare cases for severe heart failure.

Knowing that you have hypertrophic cardiomyopathy (HCM) is important so that your treatment can start as quickly as possible.

Your treatment plan will depend on several factors including:

• How much thickening you have in your heart muscle, and if it is obstructing or slowing blood flow leaving the heart
• How well your heart is pumping
• Your symptoms, such as any signs of heart failure or irregular heart rhythms
• Your risk of sudden cardiac death
• How the condition is affecting your life
• Your preferences and goals for care

Treatment may include a combination of medications, procedures, lifestyle changes, and ongoing follow-up visits and tests. Your care team will talk to you about the testing and treatment options, including the risks and benefits.

The overall goal of treatment will be to:

• Ease any symptoms for example, chest pain, heart failure, palpitations
• Prevent or lessen complications, such as blood clots, heart failure, or dangerous heart rhythms that can lead to sudden cardiac death

Treating other conditions that can affect your heart is also important—high blood pressure, high cholesterol, diabetes, smoking, sleep apnea, carrying too much weight. These all can make HCM worse.

Shared Decision-Making

With HCM, screening and treatment decisions are not always clear cut. What might be the right choice for one person may not be the one for another. Shared decision-making can help you work with your care team to find the right option for you.

In shared decision-making, you should speak up and let your care team know what is most important to you. With your values and goals in mind, you and your care team will review your treatment options, and the risks and benefits of each.

Hypertrophic cardiomyopathy (HCM) is usually caused by a gene mutation that is passed down in families.

If you have a parent with the condition, you have a 50/50 chance of inheriting it. In the same way, if you have it, each of your children has a 50/50 chance of being born with this mutation.

Because it’s a genetic condition, it’s a good idea to talk with your health care team about your family history. For example, have any family members—especially parents or siblings—died suddenly without a clear cause?

Understanding Your Family’s Risk

If you have a parent, brother, sister, or child (first-degree relative) with hypertrophic cardiomyopathy (HCM), your care team may recommend you get screened for the condition. Screening can involve genetic testing or imaging tests, or both.

These steps help ensure that those with a higher chance of having the condition are monitored and treated if needed.

Counseling can help you assess your family’s risk of HCM and decide on testing. A counselor can review the pros and cons of genetic testing, how the test results will be used, and whether it will be covered by your insurance plan.

If you have HCM, the main reason to perform genetic testing is to find out if genetic screening would be useful for your children, siblings, or parents. But genetic tests don’t always detect the mutation for HCM.

Heart imaging tests and other assessments are usually recommended after 12 years of age. Thickening of the heart muscle often doesn’t appear until adolescence. But it may start earlier if the child is having symptoms or plays competitive sports.

When to screen also could be guided by your family’s specific history or preference. Talk to your care team to be sure you understand whether you or your family members should be screened and how often. 

Exams and Tests

Your care team may suspect you have hypertrophic cardiomyopathy (HCM) if:

• Your parent, sibling or child has it
• You have certain symptoms
• Your clinician hears a heart murmur when listening to your heart

Imaging and other tests can show signs that the heart muscle is unusually thick. These tests, in particular an echocardiogram, are used to confirm a diagnosis.

These tests are usually ordered because of family history of the disease or to rule out other diseases, including valve problems.  

Common tests include:

• Echocardiogram: This test uses sound waves (ultrasound) to look at the structure of your heart. It can show if your heart muscle is too thick. It also shows how well the chambers and valves in your heart are pumping.
• Electrocardiogram (ECG): This test uses sensors placed on your chest and sometimes legs to record the electrical activity of the heart. It can detect irregular heartbeats and signs your heart muscle is enlarged. You may be given a Holter or wireless monitor to wear for a day or more to measure electrical signals from your heart over a longer time.
• Exercise or stress testing: This test allows your doctor to see how your heart performs during activity (usually on a treadmill or exercise bike). Your doctor will watch your blood pressure, heart rate, how your heart beats and any symptoms you feel.
• Magnetic resonance imaging (MRI) of the heart: This test can detect a thickening of the left ventricular wall. It may help identify areas not seen in an echocardiogram.

In some cases, genetic testing may also be used to find out if you, your children, siblings or parents carry the gene mutation that causes HCM.

Many people with hypertrophic cardiomyopathy (HCM) have no or few symptoms. As a result, the condition may go unnoticed for a while:

• Until a doctor hears a heart murmur during an exam or sees something on a test, most commonly an electrocardiogram, or
• Because a close family member (parent or sibling) is diagnosed with it or known to have died suddenly at a young age.

How someone with HCM might feel varies widely, even among family members. It will depend on several factors. For example, how much thickening there is to the heart muscle, and whether it is slowing or blocking blood flow to the body.

The most common signs and symptoms are:  

• Feeling short of breath, especially when exercising or being active
• Dizziness or fainting
• Chest pain
• Heart palpitations or fluttering of the heart
• Being overly tired or having little energy to do usual activities

In many cases, symptoms may start only with exercise or when exerting oneself. For example, people often notice that an activity they used to do—jogging, hiking, or even climbing stairs—seems more difficult and leaves them short of breath. In some cases, they may even faint.

How does physical activity play a role in triggering symptoms? Normally, with exercise your heart pumps faster and stronger. It gets your blood pumping and improves circulation.

But because a thick heart muscle may already be blocking blood flow to the body, the body’s normal response to exercise can make the blockage worse and further reduce blood flow to the body. Being dehydrated also can make symptoms worse.

Although rare, HCM can cause life-threatening heart rhythms and sudden death if the condition isn’t found or well managed. Other complications can also develop. Early diagnosis and treatment are important.

Potential Complications

Several serious conditions or complications can develop if hypertrophic cardiomyopathy (HCM) is not properly identified or managed. These include:

• Blocked blood flow out of the heart: You may feel short of breath, dizzy, or have fainting spells or chest pain. If blood can’t easily leave the heart, it may prevent the mitral valve from closing. Blood can leak backward into the left atrium (mitral valve regurgitation).
• Heart failure: This can happen when the thickened muscle becomes so enlarged and stiff that 1) the heart can’t relax and fill with enough blood or 2) becomes weak and can’t pump well enough to meet your body’s needs.
• Blood clots: These can form in the heart because blood isn’t moving through the heart very well.
• Dangerous, rapid heart rhythms (arrhythmias): Ventricular tachycardia or atrial fibrillation, for example, may occur because the structural changes in the heart muscle can alter the heart’s electrical system that keeps the heart beating at a steady pace.
• Sudden cardiac death in rare cases: Many don’t know they have HCM. Sometimes, sudden cardiac death is the first sign. While rare, it can happen in people who seem healthy, including young athletes and other active adults.
• Infections of the heart valve (endocarditis)

Your heart is a muscle. Inside of it, there are four spaces, or chambers. If you have hypertrophic (hi-per-tro-fik) cardiomyopathy or HCM, your heart muscle gets thicker, making these chambers smaller. This may make it harder for your heart to pump blood out to your body.

If untreated or poorly managed, hypertrophic cardiomyopathy can cause other serious conditions such as heart failure, dangerous heart rhythms, and even sudden death. So finding it early is key.

HCM is usually passed down in families (inherited). If you or a family member has been diagnosed with HCM, be sure to talk with your clinician about genetic testing and screening.  

Also, it’s important to remember that you’re not alone. HCM is the most common genetic heart disease in the U.S. It affects at least 1 in 500 adults. But even more people may have it and not know they do.

As with any heart condition, it is important to take good care of yourself and follow your care team’s recommendations. Use this condition center to learn more about HCM.

Overview

In most cases, hypertrophic cardiomyopathy (HCM) is an inherited condition passed down in families. If you have HCM, you likely were born with a gene mutation that changes the “instruction manual” telling cells what to do. This change makes the heart muscle become too thick.

“Hypertrophy” means to thicken. This thickening can make it harder for the heart to relax and fill with blood and pump oxygen-rich blood to the body.  

HCM can be difficult to diagnose, especially as many people don’t have symptoms. When they do, it can be mistaken for other conditions, including heart valve disease—mitral valve disorders, aortic stenosis—exercise-induced asthma or anxiety.

Early diagnosis is important to avoid complications, including life-threatening heart rhythms and sudden death. Tragically, HCM is one of the most common reasons for sudden deaths among young people and athletes who didn’t know they had the condition.

HCM usually affects the main pumping chamber of the heart (left ventricle) and the muscle wall that separates the left and right sides of the heart (septum). If the muscle wall becomes thicker than normal, it can bulge into the lower chamber of the heart.

This bulge can disrupt the flow of blood to the main artery that carries blood to your body (aorta). If this happens, you may feel very tired or have a hard time catching your breath.

When do these changes happen? It varies. The thickening of the heart muscle often coincides with growth spurts in puberty as someone physically matures, and then it levels off. But many patients won’t notice anything. When they do, it might not be until middle age. Still, its presence can be deadly. A sudden death may be how it is found.

The good news is that with ongoing care, many people with HCM can live a long life.