When you have hypertrophic cardiomyopathy, your heart muscle becomes thickened. This also is known as hypertrophy. The thickened heart muscle can make it harder for your heart to pump blood and increases the stiffness of the heart muscle. In addition, the condition can cause changes in the heart’s electrical system. Those changes can result in life-threatening irregular heartbeats or sudden cardiac death.
Many people who have hypertrophic cardiomyopathy don’t even know they have it. The condition often has no symptoms. Unfortunately, the first sign of the disease may be sudden cardiac death. This is far more common in younger people.
“The older you get with this disease, the less likely you’re going to have a sudden death,” says Said Alsidawi, M.D., director of the Hypertrophic Cardiomyopathy Clinic at Mayo Clinic in Arizona. “Actually, once you get to over the age of 60, the instances of sudden cardiac death become extremely rare.”
Sometimes, hypertrophic cardiomyopathy can cause serious symptoms, such as shortness of breath, fatigue, fainting, a rapid or irregular heartbeat, and chest pain — particularly when exercising.
Since many different conditions can cause shortness of breath and rapid or irregular heartbeats, it’s important to check with your healthcare team as soon as possible to discuss any symptoms you may be having.
Hypertrophic cardiomyopathy is typically inherited. Since there often are no symptoms with the condition, it’s recommended that people with a family history of hypertrophic cardiomyopathy develop a screening plan with their healthcare team.
The good news with hypertrophic cardiomyopathy is that the life expectancy of people with the condition is similar to that of the general population — if it’s diagnosed in a timely fashion and treated at a comprehensive hypertrophic cardiomyopathy center, such as at Mayo Clinic.
Still, a diagnosis of hypertrophic cardiomyopathy can significantly affect your life. In some cases, it can lead to limitations in physical activity, emotional distress, family stress, fatigue, potential impacts on work and financial strain.
Exercise encouraged, with some limits
Regular exercise is key to heart strength and function. For those with hypertrophic cardiomyopathy, exercise is generally recommended when done with the guidance of your care team. Recent research suggests that vigorous exercise can be safe for some people who don’t have symptoms — but only after careful evaluation by a hypertrophic cardiomyopathy expert.
“In the past, we used to tell people not to exceed moderate amounts of activity,” says Dr. Alsidawi. “Last year, that changed because of new data showing that, actually, vigorous exercise was safe and even a healthy thing for these patients to do.”
Still, it’s important to work with your healthcare team to find an exercise routine that’s best for you. Hypertrophic cardiomyopathy can cause symptoms such as shortness of breath, dizziness, chest pain, fatigue and heart palpitations. Therefore, you may need to limit physical activity to those activities that won’t strain your heart muscle.
When you have symptoms, moderate-intensity exercises — including yoga, walking, tai chi and stretching — may be better options than more vigorous workouts, such as running or contact sports. That’s because when you have symptoms, high-intensity exercise may worsen them and increase the risk of irregular heartbeats, also called arrhythmias.
Anytime you have chest pain, shortness of breath and fatigue while doing physical activity, take a break and contact a member of your healthcare team. Seek emergency medical care if your symptoms are severe, including if you:
- Have symptoms of a heart attack, such as chest pain, shortness of breath, sweating, nausea, feeling lightheaded, or pain in the shoulders, arms, jaw, neck or belly.
- Faint or lose consciousness.
- Struggle to breathe, especially when accompanied by coughing up mucus.
Manage stress and mental health
If you have hypertrophic cardiomyopathy, you may experience anxiety, depression and other mental health issues. Because emotional distress can trigger or worsen your symptoms, it’s important to talk with your care team about managing stress. Studies also have shown that depression, which can affect those with hypertrophic cardiomyopathy, may be linked to an increased risk of heart failure and sudden cardiac death.
There are ways to reduce anxiety, depression or mental health struggles with lifestyle steps. Meditation, mindfulness, yoga, regular exercise such as nature walks and adequate sleep are just some steps you can take. Discussing mental health symptoms with your healthcare team — even if your team doesn’t specifically ask you about it — can help start a conversation about more specific therapy options for addressing mental health.
While it’s important to be aware of the health risks associated with hypertrophic cardiomyopathy, it’s just as important to couple that with knowledge that you can still live an active and full life.
“It’s important to strike a good balance between increasing awareness, because it is a common disease, but at the same time not to scare people too much,” Dr. Alsidawi says.
Family affected too
If you have hypertrophic cardiomyopathy, it can be stressful not just for you but also for your family. That’s because of its genetic nature and because it has the potential to pose serious health risks.
But early detection, using things like genetic screenings, as well as taking steps to manage the condition, can lower stress levels for the entire family. Support groups and counseling also may be beneficial.
Hypertrophic cardiomyopathy often is inherited as an autosomal dominant trait. This means there’s a 50% chance your biological child will inherit gene changes associated with the disease if you also have the condition. Those with the gene changes associated with hypertrophic cardiomyopathy will need lifelong monitoring to see if they develop the disease.
If someone in your family has hypertrophic cardiomyopathy, talk to your care team about genetic screening and cardiac evaluations for you and your family members, including parents, siblings and children.
“If you have a family member who was told they have hypertrophic cardiomyopathy, make sure you get screened,” Dr. Alsidawi says. “Hopefully, by doing that, we will be able to diagnose more cases.”
Genetic counseling also can help your family members understand their risk and make decisions about testing and screening. Most genetic testing now is available at a reasonably affordable cost.
“The sooner you know, the better,” Dr. Alsidawi says. “There are few steps we take once we diagnose someone. We screen their families. You want to know, do your kids have it? Do your brother and sister have it? So it’s not only you.”
For people with gene changes associated with hypertrophic cardiomyopathy, echocardiogram screenings are recommended starting at about age 12. These screenings typically continue every 1 to 3 years through ages 18 to 21. After that, screenings can be done every 3 to 5 years through adulthood.
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