NBA's Jared Butler Is Raising Awareness for Genetic Heart Disease

Jared Butler

Verywell / ESPN

Key Takeaways

  • Hypertrophic cardiomyopathy (HCM) is a potentially deadly heart condition that often has no symptoms.
  • People with HCM can manage the condition, but an early diagnosis and working with a cardiologist is essential to improve a person's outcomes.
  • Anyone with a family history of HCM or sudden, unexplained cardiac death in their family should be screened for the condition.

Jared Butler, a rookie guard with the Utah Jazz NBA team, was surprised to learn that he had hypertrophic cardiomyopathy (HCM) during a routine athletic physical three years ago. He was 18 years old and about to start his college basketball career when he received the diagnosis.

Butler had been involved in sports most of his life, and never had any signs or symptoms of heart problems. “It was the first time I’d heard of HCM, and the unknown scared me a lot,” Butler told Verywell. “Luckily, I was able to continue playing basketball, but at the time I was devastated and unsure.”

HCM occurs in about 1 in 200 to 1 in 500 people.

Now, Butler is teaming up with Bristol-Myers Squibb and the Could It Be HCM? Campaign. The goal of the campaign is to educate the public about the warning signs of HCM and who should be tested for the condition.

What Is HCM?

Michael J. Ackerman, MD, PhD, a genetic cardiologist at the Mayo Clinic, told Verywell that HCM is a thickening of the heart muscle that is not explained by another underlying health condition, such as high blood pressure, heart valve disease, or a previous heart attack. The thickened heart muscle has a harder time pumping blood to the rest of the body.

There are two types of HCM: non-obstructive and obstructive HCM. Both types cause the heart muscle to thicken, but in obstructive HCM, the thickened heart muscle blocks blood to flow out of the heart.

The symptoms of HCM can include:

  • Fatigue
  • Shortness of breath
  • Chest pain
  • Fainting

These often occur during or shortly after exertion or exercise. However, some people with the condition do not have any symptoms.

In some cases, a routine electrocardiogram (EKG) shows signs of heart muscle enlargement. In other cases, a clinician might hear a heart murmur.

Awareness about HCM is critical because the condition can lead to sudden death—even in people who never develop any symptoms or signs of the condition.

Not Always an Easy Diagnosis

Some people with HCM have no symptoms. If a person does have symptoms, they might easily chalk them up to something else because they can occur in many different conditions. Likewise, healthcare providers may miss HCM or misdiagnose it.

“The symptoms can be non-specific," Ackerman said. "That’s why a lot of HCM patients have been misdiagnosed or there has been a long delay in diagnosis."

For example, feeling short of breath with activity might be diagnosed as exercise-induced asthma, and heat or dehydration could be blamed for a fainting episode.

If your doctor thinks that you could have HCM, an ultrasound of your heart (echocardiogram) can be used to confirm the diagnosis. A cardiac MRI and genetic testing can also be used to diagnose HCM.

When it's caught early (and correctly diagnosed), proper management can help prevent long-term, irreversible damage to the heart muscle and reduce the likelihood of unexpected death from HCM.

“An early and prompt diagnosis of HCM can be life-saving because when we know the patient has HCM, we have strategies to make those symptoms better,” Ackerman said. “Our success rate overall is good, we can do a good job in treating this condition when we know it’s there. It’s when we don’t know it’s there that we get blindsided by the tragedies.”

Genetics Are a Key Player

Around 60% of HCM cases are inherited. After Butler received his HCM diagnosis, genetic testing revealed that his mother, Juanea Butler, carried genes that are associated with HCM.

Like many people who have one of the genetic markers for HCM, Butler's mother does not have HCM. However, she advocates for anyone with a family history of HCM or sudden, unexplained cardiac death (especially before the age of 50) to see their doctor.

“Educate yourself," Juanea told Verywell. "If there’s a family member that you know has HCM, follow up, get a diagnosis for yourself and for your family members, and just see if you have anything going on as well. That’s the only way you can really tell."

What to Do If You Have HCM

If you or a loved one finds out that you have HCM, know that many people with the condition can live long, healthy lives if they are diagnosed early and able to access the right kind of treatment to manage the condition.

“Once we have a great treatment strategy in place, we can work with that person to find out who they were before their diagnosis of HCM, and who they want to be," Ackerman said. "They should expect to live and thrive despite their diagnosis."

According to Ackerman, HCM treatment is tailored to each patient’s symptoms and condition. If patients are stable and asymptomatic, they may only need to have regular monitoring with their cardiologist. Some other treatment options for HCM include:

  • Medications: Beta-blockers, ACE inhibitors, and ARBs reduce the workload on the heart. Easing the heart’s workload means less strain on the heart muscle, which can prevent HCM from getting worse.
  • Surgery: Septal myectomy is a surgical procedure that reduces the size of the enlarged heart muscle that divides the left and right sides of the heart (septum). The procedure can be beneficial in obstructive HCM, in which blood cannot flow out of the heart.
  • Nonsurgical procedures: An alcohol septal ablation also reduces the size of the heart’s septal wall. The procedure is less invasive than septal myectomy and involves an interventional cardiologist inserting a thin, flexible catheter through the groin up to the heart. Then, they inject alcohol into the heart muscle, causing some of the enlarged heart muscle to shrink and die.
  • Pacemakers: Some people with HCM are candidates for an automatic implantable cardioverter-defibrillator (AICD). The permanent device controls the heart rate, synchronizes cardiac muscle contractions, and can prevent sudden cardiac death caused by an abnormal heart rhythm.

Butler does not have any signs or symptoms of HCM, but he sees Dr. Ackerman twice a year to monitor the condition. His cardiology team also communicates regularly with the Utah Jazz team doctors to ensure he's safe to play.

“It’s not the end of the world if you are diagnosed," Butler said. "It’s just a first step."

What This Means For You

If you have experienced symptoms of HCM, you have a family member with HCM, or any relative of yours who died suddenly and unexpectedly from a heart-related cause before the age of 50, talk to a healthcare provider about screening for HCM. To learn more about HCM, visit CouldItBeHCM.com.

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3 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. Marian AJ, Braunwald E. Hypertrophic Cardiomyopathy: Genetics, Pathogenesis, Clinical Manifestations, Diagnosis, and TherapyCirc Res. 2017;121(7):749-770. doi:10.1161/CIRCRESAHA.117.311059

  2. NYU Langone Health. Septal Myectomy Surgery for Hypertrophic Cardiomyopathy.

  3. Hopkins Medicine. Alcohol Septal Ablation.