How to Know Your Hypertrophic Cardiomyopathy Risk

Despite its prevalence within certain families, many people don’t know they have hypertrophic cardiomyopathy (HCM). This heart condition doesn’t always cause symptoms, so some people unknowingly live with it for decades. Sadly, some only learn their status after a medical emergency occurs.

What is hypertrophic cardiomyopathy?

HCM can be linked to a mutated gene that causes tissue in the heart to hypertrophy, or become abnormally thick. This condition can harm the body by blocking or reducing the amount of blood that can leave the heart with each beat. 

Even if the thickened tissue doesn’t block blood flow, it can reduce the volume of blood that the heart chambers are able to hold. It may also lead to other cardiac abnormalities, such as arrhythmia (irregular heartbeat).

HCM increases the risk of heart failure, sudden cardiac arrest, and stroke. As a result, it’s important to know your own risk.

How do I know if I’m at risk for hypertrophic cardiomyopathy?

Not everyone with HCM experiences symptoms. For this reason, it’s not usually helpful to use the presence or absence of symptoms to know if you have HCM. Instead, screening is the best way to know your status. 

“The way it's inherited, roughly 50 percent of children from somebody with hypertrophic cardiomyopathy will [likely] go on to develop the same condition,” says Sirish Vullaganti, MD, Cardiologist at Northwell Health.

If you have a family history of HCM, you should talk to a doctor about screening. If screening shows you do not have HCM, experts recommend getting retested periodically. This may depend on your symptoms, findings, and age. The American College of Cardiology recommends retesting:

• Every one to two years in adolescents

• Every three to five years in adults

• Or if clinical status changes

What should I do if I have symptoms of hypertrophic cardiomyopathy?

For those who do have symptoms of HCM, the most common include:

• Shortness of breath

• Reduced stamina

• Chest pain or pressure

• Fluttering heart (arrhythmias)

• Racing heart (tachycardia)

• Dizziness

• Lightheadedness

• Fainting

If you’re having these symptoms, see a doctor. A doctor can help set you up for tests that may pinpoint the issue — whether it’s HCM or something else.

What should I do if I have hypertrophic cardiomyopathy?

“Knowledge is power when it comes to hypertrophic cardiomyopathy,” says Dr. Vullaganti. “If you've been diagnosed with hypertrophic cardiomyopathy and you have a family member, sibling, parent, [or] child, it's very important that they get tested for this condition as well.”

Should I seek genetic testing for hypertrophic cardiomyopathy?

Genetic testing is available for HCM to look for a gene mutation associated with the condition. However, Dr. Vullaganti warns that it’s not as effective as diagnostic screening specifically for HCM, which includes a physical exam, electrocardiogram (EKG), and heart ultrasound or echocardiogram.

“Regardless, the field is changing rapidly and we're getting more and more tools to help diagnose this condition,” says Dr. Vullaganti. “It's always good to talk to your doctor and make sure that they're doing the appropriate testing.”

Why trust our experts?

Written by:

Lauren Smith, MA

Lauren Smith, MA, has worked in health journalism since 2017. Before joining GoodRx, she was the senior health editor and writer for HealthiNation.

Reviewed by:

Mera Goodman, MD, FAAP

Mera Goodman, MD, FAAP, is a board-certified pediatrician. Prior to practicing medicine, she worked as a management consultant.

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