Alexander Bolanos, MD
Cardiology
Orlando Health

You probably haven’t heard of hypertrophic cardiomyopathy, but it’s the most common cause of sudden cardiac death in people younger than 35 years old. The condition, which causes your heart muscle to thicken for no apparent reason, is often inherited. You can have the disease and never know it.

Researchers are still learning about the causes of this disease. Most cases are passed down from a parent to a child, but it also is linked to high blood pressure and age. There are times, however, when the cause remains unknown.

Here’s what you need to know.

Hypertrophic Cardiomyopathy Symptoms

Hypertrophic cardiomyopathy (HCM) can be difficult to diagnose because some people never have noticeable symptoms. This is particularly troubling with young athletes, who appear to be in peak health – without realizing they have a potentially life-threatening disease. The disease offers yet another reminder of the importance of annual physical exams with a primary care doctor, who may notice important heart changes during routine tests. When symptoms do appear, they include:

  • Chest pain: This could happen during physical activity, rest or after meals.
  • Shortness of breath and fatigue: These symptoms get worse with exertion.
  • Fainting or passing out: This may be caused by irregular heart rhythms during exercise.
  • Heart palpitations: Your heart feels like it is fluttering or beating too fast.
  • Abnormal heartbeat (arrhythmia): You may have a fast heartbeat as result of atrial fibrillation or ventricular tachycardia.

If hypertrophic cardiomyopathy is suspected, your doctor likely will suggest an echocardiogram, which can reveal a thickening of your heart’s walls. That could be followed by genetic testing to see if you have any of the genes known to be associated with the disease. If those tests are positive, genetic screenings could be recommended for your children, parents and siblings.

Affecting an estimated 1 in 500 people, the disease isn’t common enough to justify screening everyone. But some athletic programs have started routine testing of athletes with echocardiograms to avoid tragic heart attacks on the field.

That’s how professional basketball player Jared Butler learned that he had the disease. It was detected through a screening program at Baylor University, where he attended college. With proper management of the disease, Butler had a successful college career and was drafted into the National Basketball Association in 2021.

Treating Hypertrophic Cardiomyopathy

Even if you have the condition, your risk of sudden cardiac death is very low. Often, it’s treated with medications, including beta blockers and calcium channel blockers that help your heart muscle relax and work more efficiently. Other medications can help control your heartbeat and reduce the frequency of irregular heartbeat episodes. You may also need to take antibiotics to reduce your risk of bacterial endocarditis, a dangerous infection in your heart valves and chambers.

Lifestyle changes can bolster your heart strength. For example, if you have any heart failure symptoms, you may need to cut back on salt and fluids. And while you should still be able to exercise, your doctor will help determine safe guidelines. You may be asked to avoid weightlifting or high-intensity sports.

In severe cases, the thickened heart muscle interferes with blood flow in your heart, increasing your risk for sudden cardiac death. Your doctor may recommend a more aggressive approach to avoid heart failure, including:

Ethanol ablation: This minimally invasive procedure uses a tiny bit of pure alcohol to kill some of the muscle cells in your septal wall – the muscle tissue separating the right and left sides of your heart. This forces that thickened wall to shrink to a more normal size, allowing for better blood flow. Your surgeon reaches the area using a long, thin tube (catheter) threaded through one of your arteries.

Implantable cardioverter defibrillator (ICD): This small device is implanted under your skin, where it is connected to your heart by way of tiny wires. It constantly monitors your heartbeat – ready to deliver a small shock to correct an abnormal heart rate. It can help prevent sudden cardiac death or life-threatening arrhythmias.

Septal myectomy: This is an open-heart surgery in which the thickened heart tissue is trimmed away by the surgeon. The procedure can take three to four hours and you will likely spend up to five days in the hospital for recovery.