Hypertrophic cardiomyopathy (HCM) is an underdiagnosed genetic heart condition. Raising awareness through advocacy can help increase the rates of diagnosis and proper management.

HCM is when the left ventricle (the lower section of the heart muscle) becomes thick and stiff. HCM reduces the amount of blood the heart can bring in and pump out with each beat, and the condition can worsen over time.

HCM can run in families. As many as 1 in 200 to 1 in 500 people have HCM, but many do not know they have it. Misdiagnosis is also common, with symptoms like shortness of breath misattributed to asthma and racing heart rate to panic attacks or anxiety.

Raising awareness about HCM can help support early diagnosis. When people know they have HCM, they can monitor and treat the condition. Treatment can help reduce the risk of serious health consequences. Here’s how you can get involved.

People with HCM might have few or no symptoms. You might only have symptoms when exercising or doing some kind of physical activity.

Some signs of HCM are:

  • chest pain, especially with exercise or exertion
  • shortness of breath, especially with exercise or exertion
  • dizziness or lightheadedness
  • fainting
  • swelling in ankles, feet, or lower legs
  • arrhythmia (irregular heart rhythms)
  • fatigue

You might receive an HCM diagnosis after a doctor refers you for testing. Often, this happens only if you have a family history of HCM or you have certain heart symptoms.

A doctor might recommend testing if you have:

  • a heart murmur (swishing sound in the heart)
  • unusual electrical heart activity, as measured by an electrocardiograph (ECG)
  • heart imaging that shows possible HCM
  • symptoms of HCM
  • a first-degree relative with HCM

First-degree relatives are the parents, children, and siblings of someone with HCM. A doctor might also recommend screening other close relatives.

Because HCM can develop over time, doctors may periodically scan a person as they age. When there’s a known family history, screening happens about every 1 to 3 years between the ages of 12 and 21 and every 5 years over the age of 21.

To diagnose HCM, a doctor performs tests to look at, listen to, and measure your heart. Some tests include:

  • echocardiogram (cardiac ultrasound)
  • transesophageal echo (TEE)
  • ECG
  • cardiac MRI
  • cardiac CT
  • Holter monitor test
  • stress test
  • genetic testing

With HCM, there’s a greater risk of developing other heart problems, like atrial fibrillation, which can lead to blood clots, cardiac arrest, or stroke.

One way to get involved is to participate in specific events on HCM Awareness Day — February 26, 2025.

Check out the Hypertrophic Cardiomyopathy Association (HCMA) calendar with the latest event news. The Association hosts an online Awareness Day webinar and an HCMA open house on February 26.

You can raise awareness about HCM year-round. By sharing your story and working with advocacy groups, you can help put a face to the condition. You can also share important information about HCM and the path to diagnosis.

Here are some ways to get involved.

Join an advocacy group

Groups like the HCMA advocate for people with HCM to governments and the public. By joining, you can participate in those efforts.

HCMA promotes public policy, scientific research, education, and access to specialized healthcare for people with HCM. It also offers support networks for those living with HCM.

By becoming a member, you increase the number of people the HCMA speaks for. You also have a voice in advancing patient-focused healthcare. Learn how to become an HCMA member on its website.

You can also learn about the advocacy initiatives of the HCMA and volunteer to help in your state.

Attend fundraising events

Another way to get involved is to participate in fundraising events. Organizations like the HCMA offer various ways to raise much-needed resources, such as cooking “FUNdraisers.” The events help develop community and connections among people affected by HCM.

Share your or a loved one’s story

One powerful way to spread awareness of HCM is to share your personal experience with it. The American Heart Association (AHA) features personal stories of HCM on its website, showcasing the condition’s wide-ranging effects on people in communities across the country.

The HCMA has a Faces of HCM campaign featuring individual stories of people and their families. These stories appear on the HCM’s social media and YouTube channel, where people share their reasons for getting involved in their own words.

Join a support group

While 1 in 200 people might not sound like many, you don’t have to feel isolated with HCM. There are support groups of people with an HCM diagnosis who come together to talk about their experiences.

The HCMA has a private Facebook group and smaller online discussion group meetings. The AHA also has several online support groups for people who have heart conditions.

HCM is an underdiagnosed condition that can lead to serious heart risks. Spreading awareness about HCM may help with early diagnosis and proper management of the condition.

Consider sharing your story, joining an advocacy group, and talking with others affected by HCM.