Hypertrophic cardiomyopathy: A serious heart condition that may be hiding in plain sight

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Hypertrophic cardiomyopathy, or HCM, is a lifelong heart condition where the heart muscle wall thickens, stiffens, and makes it harder for the heart to pump oxygenated blood throughout the body. It is the most common inherited heart disease, yet most people with HCM don’t even know they have it.  

Consider this: 

• It has been estimated that HCM affects between 1 in 200* to 1 in 500† people in the general population.
• However, only about 100,000‡ people in the U.S. have been diagnosed with HCM, suggesting that approximately 85%§ may remain undiagnosed.

A heart affected by HCM may have to work harder and may have difficulty pumping oxygen-rich blood out to the rest of the body, resulting in symptoms which can include shortness of breath, chest pain, rapid heartbeat, unexplained tiredness, feeling dizzy or lightheaded and fainting. HCM can be a challenge for healthcare providers to diagnose because it can be asymptomatic and its symptoms can be similar to those of other conditions, such as heart failure, anxiety, asthma, atrial fibrillation and chronic obstructive pulmonary disorder.

“Early diagnosis of HCM is critical because a delayed or missed diagnosis may put a person’s health at greater risk,” said Michael J. Ackerman, M.D., Ph.D., Genetic Cardiologist and Director of the Windland Smith Rice Genetic Heart Rhythm Clinic at the Mayo Clinic in Rochester, MN. “HCM is associated with an increased risk of heart failure and in some cases, even sudden cardiac death. It is important to make people aware of HCM.”

If you’re experiencing possible signs or symptoms, talk to your doctor and ask if you should see a cardiologist (heart specialist). Only a healthcare provider can determine whether these symptoms indicate HCM or another condition. For more information about HCM, including downloadable resources to aid in conversations with your doctor, visit CouldItBeHCM.com.

Dr. Ackerman is a paid scientific advisor for Bristol Myers Squibb.

Helpful Resources

Visit the HFSA Patient Hub to explore tools and resources to help patients stay healthy while living with heart failure. 

View Heart Failure Awareness 365 activities to stay up-to-date on tips for healthy living for people living with heart failure.

References

* The 2015 Semsarian publication identified that the prevalence of HCM gene carriers could be as high as 1 in 200.
† The 1995 CARDIA study—a multicenter, US-population–based echocardiography study of 4111 subjects (aged 23–35)—identified the prevalence of HCM as 1 in 500 people in the general population.
‡ Based on 2013 ICD-9 claims data analysis (N=169,089,614): An estimated ~700,000 overall US prevalence of HCM (1. ~100,000 patients with diagnosed HCM [based on 2013 US Census population], 2. ~600,000 patients with undiagnosed HCM [based on analysis’ assumption that 1-in-500 prevalence represents clinically unrecognized cases]).
§ Estimated undiagnosed range calculated using prevalence of 1 in 500, estimated US population (332,330,571 in May 2021), and estimated diagnosed population (~100,000).