Jared Butler didn’t want to be defined by what he wasn’t, but by what he was. He didn’t want to be at a competitive disadvantage in the cutthroat process of the NBA Draft, where one so-called red flag can send you tumbling.
Indeed, that’s exactly what happened to Butler, as the NCAA tournament’s Most Outstanding Player fell from having his name being frequently mentioned in the teens in mock drafts to becoming the No. 40 overall pick with the Utah Jazz on draft night.
Before now, Butler hadn’t been ready to talk about the heart condition that threw a wrench into his budding basketball career. When asked about it, the Utah Jazz rookie would simply say, “I won’t go into specifics about the condition,” and leave it at that.
That changed this week.
Butler is ready to tell his story.
“You know, I think I just grew as a person,” he said. “I just started to take a look at my life and asked ‘How can I affect people? How can I produce change in the world?’ And I think you kind of start by looking at what happened with what has happened in your life.”
So here’s Butler’s truth: he has a condition called hypertrophic cardiomyopathy, abbreviated as HCM. Essentially, it means that the walls within his heart are thicker than the average person’s, which means that there is less room in his heart for blood than usual, along with less blood flow out of the heart.
People with HCM frequently see symptoms like shortness of breath, tiredness, chest pains, rapid heartbeat and dizziness — symptoms that are common across many afflictions, but more rare in someone young and athletically gifted like an NBA player. However, over the population as a whole, an estimated 1 in 200 to 1 in 500 people are believed to have HCM. However, only roughly 15% of those have been diagnosed; thanks to the similarity of those symptoms to many other afflictions.
Butler, though, is a lucky one. He did get diagnosed fairly early. When undergoing a routine physical as he prepared to play a major role for the Baylor Bears as a four-star prospect from Riverside Academy in Louisiana, Butler’s electrocardiogram results came back as abnormal. Doctors investigated, and discovered Butler’s HCM.
“I was pretty devastated,” Butler said. “I think the unknown was the scariest part about it, especially for an 18-year-old.”
The news shocked him, because he’d never had any symptoms: he participated in hard workouts in basketball and football alike without any problems. And because HCM is a genetic condition, after Jared’s diagnosis, his mother Juanea was tested, and was also found to have the genetic marker that defines HCM. It was something they’d experience together.
“He had it genetically, so it had to come from somewhere,” Juanea said. “So I was the culprit. I was the one.”
But Butler learned that his manifestation was a mild one. Their doctor, Michael Ackerman from the Mayo Clinic, explains that different styles of HCM can express themselves in different ways; HCM can also evolve over the course of someone’s life. For Butler, that means regular checkups with Ackerman on the condition of his heart: they’d expect to see changes in his heart tests before he experienced any new symptoms in physical activity. If the test results were to change, Butler might have to receive various courses of treatment to address the issue.
Thanks to those recurring checkups, though, Butler could safely play basketball just as he always had. His trademark of hard, physical workouts could continue, and he improved rapidly. By the time he was a junior, he was one of college basketball’s best players, leading Baylor to the national championship this season.
And then came the poking and prodding process of the NBA Draft. Before playing in the NBA, players typically go through physicals and workouts for some of the 30 teams that may draft them. Butler, however, was forced to skip most of that process, as he was referred to the NBA’s Fitness To Play Protocol before he would be allowed to play in an NBA game, or even participate in an NBA practice. Butler explained the process:
“Whatever the field of interest is, they get three doctors: One from the NBA, one from the NBA Players Association and those doctors collaborate on getting a third doctor to make it a three-person panel,” Butler said. “I got a chance to speak before the panel (along with) my agent and some other representatives, I wanted to state my case and give last remarks about why I should play.”
After about a month in purgatory, the panel decided to give Butler the green light. When he entered the Jazz’s matchup against the Oklahoma City Thunder on opening night, he became the first NBA player to play with diagnosed HCM.
Butler’s success story doesn’t mean HCM is to be ignored, though — others have more serious symptoms from the condition. This week, the medical company Bristol-Myers Squibb started a new campaign for HCM awareness, built around Butler as main spokesperson. A website, CouldItBeHCM.com, forwards people to more information about the condition. Butler’s doing TV, radio, social media, and newspaper interviews to highlight his story, with two calls to action:
No. 1: If someone feels shortness of breath, dizziness, chestpains, or fainting spells during or after workouts, it could be HCM — and to ask your doctor for tests.
No. 2: If you are related to someone with HCM, you could have it too, and it could be worth a genetic test to find out.
From his point of view, Ackerman believes the Butlers, both Jared and Juanea, can be perfect examples as to why those with HCM can still find success.
”Jared is an inspiration to so many young people, or to anybody who has this condition, about how do you live and thrive despite the diagnosis,” Ackerman said. “And perhaps he’s being an inspiration to continue to change a mindset that has been out there for over a quarter of a century — which has been, if we find you with this condition; disqualify him, ‘If in doubt, kick them out.’ That is changing, and that is changing in a very dramatic way.”
Butler, and his heart, are leading the way.