Jared Butler opens up about HCM diagnosis

Published 12:15 am Saturday, November 20, 2021

RESERVE — Reserve native Jared Butler is heading into his first season with the Utah Jazz, where he will be the first-known active NBA player with a genetic heart condition called HCM, short for hypertrophic cardiomyopathy.

Jared is sharing his story for the first time and partnering with Bristol Myers Squibb to raise awareness for Could It Be HCM? (CouldItBeHCM.com), a resource that seeks to educate people about HCM and encourage individuals with symptoms or a family history to speak to their healthcare providers.

Before he was a basketball sensation leading the Baylor Bears to their first NCAA National Championship, Jared was an 18-year-old recent high school graduate preparing to start his basketball career at the University of Alabama. A routine physical changed everything when Jared’s EKG displayed abnormal results. After a cardiac MRI and other tests, he was diagnosed with HCM and deemed unable to pursue his basketball career at the University of Alabama.

Working with genetic cardiologist Dr. Michael J. Ackerman helped Jared understand his diagnosis and institute a monitoring program. Jared went on to have an incredible athletic career at Baylor with numerous accolades, including being named the Final Four Most Outstanding Player in Spring 2021. 

“When I found out I had HCM, it was the first time I had ever heard of that condition. I was really confused, shocked and wondering what it meant for the rest of my playing career and my regular life,” Jared said. “Fortunately, my HCM is kind of unique. I didn’t have any symptoms before getting tests and I haven’t had any after, so it didn’t change the way I play on the basketball court, but it changed the way I look at my life. I am continuing to work with Dr. Ackerman to monitor my lifestyle and the way I’m feeling. He explained it really well and made me feel extremely comfortable with continuing to play.”

According to Dr. Ackerman, HCM occurs when the heart muscle thickens, making it difficult to effectively pump blood. The condition impacts between 1 in 200 and 1 in 500 individuals, and it has been estimated that many patients remain undiagnosed.

HCM is a genetic condition that can run in families. This lifelong condition may get worse over time and cause serious complications. Some will experience debilitating effects that reduce physical functioning and well-being, while others may never know they have HCM. Dr. Ackerman said symptoms may include shortness of breath, tiredness, chest pains, rapid heartbeat, dizziness or fainting spells, especially during physical activity or exertion.

Jared has learned there are many “flavors” of HCM that can affect how a person experiences the condition.

“It’s a big part of my life and something that happened to me, so I just wanted to share my truth and my story. I think that this allows a way for people experiencing the exact same thing to go through it together. In my case, the people who shared their experiences with HCM helped me a lot and helped guide me to places that I never thought I’d be,” he said.

Juanea Butler vividly remembers being in the backyard with her husband when they received a call urging them to look into Jared’s medicals.

“At first, I was confused because he’d played just about every sport – football, basketball, baseball, and he ran track. I thought, this doesn’t run in my family. Come to find out, yes, I do carry the gene,” Juanea said.

It was an eye-opening experience when she was tested for HCM in June 2021. Although she does not currently experience any symptoms of HCM, Juanea continues to learn more about the condition to support her son as he pursues his athletic career, and she is encouraging other family members to pursue genetic testing.

“I think it’s important that we raise awareness for HCM because it is really complicated, and it can mimic so many other conditions. It’s important to know if anyone in your family is experiencing this and consult your doctor about any concerns,” Juanea said. “Jared is very adamant about getting the message out. Working with BMS (Bristol Myers Squibb) has really changed my outlook. This is our opportunity to give someone else hope and let them know they are not alone.”

Throughout Jared’s HCM journey, Juanea said the goal has always been for him to fulfill his dream.

“He’s always wanted to play basketball since he was little. To see him out there, to see that dream come true and have that opportunity means everything and puts a smile on my face,” she said.

Dr. Ackerman personally takes care of more than 700 athletes with a variety of genetic heart conditions, and he always poses a question called “the two Os.” Is the sport “O” for optional, or is it “O” for oxygen? With Jared, it was clear that basketball was oxygen.
“Telling an athlete they are done playing a sport takes about 10 seconds. Enabling the athlete to stay, play and keep doing what they love to do takes hours and hours, over and over again,” Dr. Ackerman said.

Around 85% of athletes choose to press on as their medical team tailors a monitoring program specific to them.

Dr. Ackerman is thankful that high schools and colleges across the country, including Division One university basketball programs, are instituting obligatory ECG screening programs that make it easier to identify signs of HCM in young athletes.

“I’ve seen delays in diagnosis for years where patients have been taking an inhaler for ‘exercise induced asthma’ when, all along, it was the organ sitting in between the lungs that was to blame for those symptoms,” Dr. Ackerman said. “’Could it Be HCM?’ is really about getting the word out about those symptoms and getting people to ask their healthcare provider the next level of questions.”

Additional information can be found at CouldItBeHCM.com.