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Hypertrophic cardiomyopathy (HCM) is the most common inherited heart muscle disease. It affects about 1 in 500 people in the United States. HCM does not always cause symptoms or get in the way of daily life. Still, it’s important to know you have it so you can work with your doctor, watch for changes, and lower the chance of problems over time.
Most people with HCM can live a normal lifespan. To better understand your risks and treatment options, it helps to see a healthcare professional who specializes in HCM.
HCM may be caused by inherited gene mutations (changes) that lead to left ventricular hypertrophy. This happens when the left ventricle’s muscles become thick. But in some cases, the cause of HCM is unknown.
Researchers have found that not all HCM cases have an identifiable genetic cause. The disease may result from a combination of genetic and environmental factors.
HCM can make it difficult for the heart to pump properly. That’s because it squeezes the inside of the left ventricle, making it smaller. The squeezing blocks the normal flow of oxygen-rich blood from the heart to the rest of the body.
HCM is a progressive disease. This means it can get worse over time, possibly leading to serious complications.
Symptoms of HCM may include:
Symptoms often appear only during exercise or strenuous physical activity. Some people with mild HCM may not have any significant symptoms. Those with severe HCM may experience symptoms even while resting.
HCM affects everyone differently. Understanding your hypertrophic cardiomyopathy prognosis helps you work with your healthcare team to manage the condition effectively.
Recent research shows that with modern treatment approaches, most people with HCM can achieve normal or near-normal life expectancy. One study found HCM-related mortality is low, with a 10-year survival rate of 95 percent. This means that most people with HCM have a similar life expectancy compared to those without HCM.
It’s still important to keep up with long-term care, as some people are at a higher risk of serious problems from HCM. Risk factors for sudden cardiac death include a family history of sudden death and fainting, as well as blockages in the heart.
Nonsustained ventricular tachycardia, a dangerous irregular heartbeat, is also connected to a higher risk of heart-related death. Additionally, moderate to severe heart-function problems caused by heart failure can raise this risk. Talk to your cardiologist if you have questions about your long-term outlook.
Complications are medical problems associated with a disease. HCM can cause many complications. These include arrhythmia (abnormal heartbeat), stroke, mitral valve disease, endocarditis, heart failure, dilated cardiomyopathy (the heart getting bigger and weaker), sudden cardiac arrest (when the heart suddenly stops), and problems that happen when blood can’t flow out of the heart as easily.
Talk to your healthcare provider about the possible complications of HCM and which medications and healthy lifestyle changes can help support your heart health.
Arrhythmias, abnormal heart rhythms, are a common complication of HCM. Several types of arrhythmia affect heart rate and heart function. Atrial fibrillation, also called AFib, is the most common arrhythmia that people with HCM may develop.
During AFib, the atria (smaller heart chambers) beat irregularly. This condition can cause:
AFib can also cause dangerous blood clots, which can lead to a stroke. Medications can control AFib, and anticoagulants (blood thinners) can help prevent blood clots from forming.
In rare instances, HCM can cause dangerous ventricular arrhythmias that need treatment. When the heart’s ventricles beat more than 100 beats a minute for more than 30 seconds, it’s called ventricular tachycardia. This rapid heartbeat can be life-threatening and needs medical attention.
To help prevent sudden cardiac death in people at higher risk, some doctors may recommend an implantable cardioverter defibrillator (ICD). An ICD is a small device placed under the skin, usually near the collarbone. It watches your heart rhythm and can send a quick electrical pulse (sometimes called a shock) to help reset a dangerous rhythm.
Mitral valve disease develops when there’s a problem with the valve between the two chambers on the left side of the heart. HCM can affect the mitral valve so it doesn’t close tightly. When that happens, blood can leak backward into the left atrium. This is a common complication of HCM.
Mitral valve disease can cause a heart murmur without any symptoms, or it can cause fatigue, shortness of breath, and an irregular heartbeat. If your disease is severe, you may need surgery or a heart valve replacement.
Infective endocarditis (IE) is an infection of the lining of the heart, usually the heart valves. Because HCM affects the mitral valve, people with HCM face a higher risk of developing IE of the mitral valve. However, this complication of HCM is rare.
IE can happen when there’s damage to the tissue that covers the heart valves, making it more likely to become infected if there are bacteria in the bloodstream. Infective endocarditis can cause fever and symptoms of infection, along with chest pain and shortness of breath. These symptoms can also be caused by mitral valve dysfunction, which means the valve between the heart’s left atrium and left ventricle isn’t working the way it should.
Intravenous antibiotics (medicines delivered directly into a vein) can effectively treat IE. If damage to the mitral valve is severe, surgery may be needed to repair or replace the valve.
Some dental procedures can let bacteria enter the bloodstream. Doctors or dentists may recommend taking antibiotics before dental work to try to prevent IE, while others feel this is unnecessary.
Heart failure is a common complication of HCM. It’s a condition that develops when damage to the heart makes it unable to provide oxygen-rich blood to the body. Heart failure can make you feel tired and short of breath or have trouble breathing. It can also cause a cough, swelling in your legs, arrhythmia, and other symptoms.
Heart failure is a serious condition, but it can often be managed with medication and surgery, and sometimes with devices like an ICD. Some people may need a heart transplant. You can have heart failure without experiencing symptoms, so ask your doctor what signs to look for. Heart failure is more treatable if you catch it early.
Some people with HCM may have dilated cardiomyopathy, which causes the heart’s ventricles to stretch out, making the chambers weak. This condition can make it harder for your heart to pump blood through your body.
At first, you might not realize you have dilated cardiomyopathy, but when symptoms show up, they can include fatigue or breathing difficulties. Sometimes, a test called an echocardiogram can detect this condition, even in a person who hasn’t shown any symptoms. Luckily, dilated cardiomyopathy is a rare complication of HCM and can be treated with medications or surgery.
Sudden cardiac death (SCD) rarely happens with HCM. However, some people with HCM are at higher risk. SCD can occur in young people — usually athletes — and in adults. Even if HCM isn’t causing any noticeable symptoms, it can increase the risk of SCD.
HCM affects people in various ways, which can feel overwhelming and scary when you’re living with a long-term condition. But the good news is that HCM is a very treatable disease — and so are many of its complications. Learning more about HCM can help you feel more confident talking with your cardiology team and lowering your risk of complications.
On MyHeartDiseaseTeam, people share their experiences with heart disease, get advice, and find support from others who understand.
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I have Hypertrophic Cardiomyopathy which has caused Right side heart failure. How do I search for Clinical Studies and Highly trained medical centers that treat this disease?
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