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Publish date: Nov 29, 2011

This article appeared in the Fall 2011 issue of Champion magazine.

Monster within

Eckerd basketball standout Lance Kearse proves sickle cell trait can be a tamed monster

By Brian Hendrickson

Why me?

Lance Kearse searched nearly four years for an answer to that question, after his body turned on him in the fall of 2007 and held him hostage, demanding all his dreams as ransom. The search was painful and maddening, the distress still tainting the Eckerd basketball player’s voice as he recalls the day his athletics career was forever altered.

It started with an intense cramp in his thigh, which steadily crept throughout his body, spreading to his hamstring, his abdomen and his back. He dropped helpless to the gym floor, locked in a 6-foot-6 full-body charley horse, too scared to move, listening to panicked voices call for 9-1-1, asking himself if he was about to die.

Kearse spots an understanding of that pain and fear only in the eyes of other sickle cell trait carriers. The condition has emerged in high-level athletics like a boogeyman over the last decade, drawing attention from media that has described tragic tales of severe health consequences, unpredictable collapses and sudden deaths. While about 8 percent of African-Americans in the U.S. carry the trait – by far the largest percentage of carriers among ethnic groups – many are unaware because the condition is considered benign in the general population.

It becomes a threat in some carriers only when the body experiences extreme physical conditions, causing red blood cells to warp into sticky, half-moon shaped sickles less efficient at transporting oxygen or moving efficiently through the bloodstream. They can clog circulation, reducing oxygen to muscles and vital organs and eventually causing acute fatigue, cramping or even collapse. 

The threat is alarming, but recognition has only recently begun to spread. Efforts to institute testing – including the NCAA Division I testing program that began in 2010 and similar efforts being considered by Divisions II and III – are attempting to improve awareness, which the medical community views as the greatest form of prevention. But many athletes don’t learn about their condition until they experience a severe incident.

Kearse was among them.

After reading about tragic incidents, he joined those who feared the trait’s dangers. His arresting fatigue, burning muscles and full-body cramps nearly chased him from the court, where his personal “monster” always lurked. But Kearse has emerged as an example of the benefits of awareness, proper treatment and education. His playing time has returned to normal. He no longer fears the burns and cramps, or questions if he’s risking his life. Closely monitoring his activity, nutrition and hydration eased concerns. And a fifth year of eligibility granted last summer by the NCAA will give him a chance to enjoy his first full season as a normal, productive player.

Kearse no longer tortures himself with that open-ended question: “Why me?”

His journey – at times terrifying, frustrating, but eventually heartening – ultimately provided a purpose, and an answer.

From Superman to sidelined

Kearse noticed something wasn’t right during his all-state career at Fort Myers High in Florida. But he never took the signs seriously.

He worked out daily, yet was the only kid in the postgame locker room exhausted and cramping while teammates laughed and celebrated. His thigh muscles would tire in games, and his combustible skills would flare out. Kearse wondered why his conditioning couldn’t match his teammates’, but his size and athleticism provided such an advantage that those deficiencies were easily overlooked.

In a state quarterfinal game against Dillard High, Kearse scored 17 points, grabbed 20 rebounds, blocked seven shots and had six steals. A report described him as a “big-time athlete” and “aggressive and relentless,” while his Nike Team Florida AAU coach Tom Topping gushed, “He’s one of the best athletes we’ve ever had in our program.”

It was a mighty statement. Kearse’s teammates included Chandler Parsons, a 6-foot-10 forward who later earned SEC Player of the Year honors at Florida and became a second-round NBA draft selection. There was also Nick Calathes, an all-SEC first-team guard at Florida who went on to play professionally in Greece, and Florida State standout Solomon Alabi, currently a Toronto Raptor. Yet after watching lob passes routinely thrown to Kearse for easy dunks, Team Florida assistant coach Ed Hall would look at the No. 5 on the muscular guard’s jersey and jokingly question if it was actually an “S.”

“He’s Superman,” Hall would say. “We became accustomed to him doing unbelievable athletic plays.”

Expectations were high when Kearse committed to VCU in 2006 to form a powerful incoming class that included eventual NBA first-round draft selection Larry Sanders – a group that as seniors guided VCU to the Final Four last spring. But as Kearse started pushing his body during preseason conditioning to meet the rigors of college basketball, he found himself struggling to keep pace. He failed conditioning benchmarks and worked to catch up with extra sessions.

As his freshman season drew close, Kearse stepped into a hot gymnasium for his third workout in a single day, trying to close the gap in his conditioning. As the training dragged on, Kearse felt his legs tire. The muscles felt lifeless. His body seemed sluggish and heavy, like he was carrying another person. He pushed on, conceding to the athletics culture that drives athletes to push through the mental barriers urging them to stop.

It’s a mental issue! It’s a block! You’ve got to break down that barrier!

So Kearse pushed as the lifeless feeling in his legs changed to a raging burn. The muscle fibers ignited with tiny cramps, as if he were pushing through the final reps of an intense weight-training exercise.

Break down that wall!

He pressed for another 10 minutes, pushing a towel up and down the court, ignoring his instincts to stop.

Don’t give in!

Kearse busted through the wall with a painful burst, and found his personal monster lurking on the other side.

He dropped to the court, quadriceps searing with a horrific cramp. He reached to massage it but experienced something he’d never encountered: The cramp kept spreading. It moved from his thigh into his hamstring, then his glutes. As he reached around, more muscles joined in – his abdomen, his back, his chest. Kearse lay on the court in agony. He was fed Gatorade, but it didn’t help. Scared to move, extremities growing cold, an ambulance en route, one thought pierced the pain.

“I was scared for my life,” he said. “I thought I was going to die.”

The pain persisted to the hospital. Nurses inserted an IV and cautioned that his creatine kinase levels were wildly elevated, signaling the dangerous breakdown of muscle fibers called rhabdomyolysis. The process releases the fiber contents into the bloodstream, which can cause kidney damage and intense pain. The incident kept him out of workouts for a month.

But sickle cell trait was never mentioned.

Similar names, different concerns

Medical experts say sickle cell trait is often misunderstood and confused with its more serious cousin, sickle cell disease. But while the conditions are related, the health concerns for each are vastly different.

Sickle cell disease is caused by the inheritance of two genes for sickle hemoglobin, the oxygen-carrying component in red blood cells. The genes cause the cells to warp into stiff, sticky crescent shapes, which can block blood flow in limbs and organs, causing pain, infections and organ damage.

Sickle cell trait carriers inherit one sickle hemoglobin gene and one normal gene. Their red blood cells retain a normal round shape and flow freely through the circulatory system. In the general population, the condition is not considered life threatening.

But when some carriers of the trait experience extreme physical conditions — such as in basic-training exercises with the military or in harsh conditioning for high-level athletics — the cells can sickle and begin disrupting the flow of blood and oxygen. In some cases it can induce dangerous results, including intense cramping, loss of consciousness and even sudden death.

The potential hazards of sickle cell trait have gained awareness in recent years, but Dr. Kwaku Ohene-Frempong, director of the Comprehensive Sickle Cell Center and a sickle cell trait carrier who previously captained the Yale track team, cautions that the potential dangers should not be cast in a one-size-fits-all mold that can attach a bias against its carriers.

He points to a study of military recruits performed in the mid-1980s that showed only 1 in 3,200 trait carriers died while performing similar exercises. Ohene-Frempong said the study suggests that not all trait carriers may experience health problems from intense exercise and raises questions about whether additional factors, such as inherited defects, may also play a role in athlete deaths.

Ohene-Frempong said further studies must be conducted to fully understand the dangers related to sickle cell trait.

“We can’t ignore it,” Ohene-Frempong said. “Nobody should go to the athletic field as a healthy young person … and suffer a serious injury that is not an accident, or die because of something they carry with them and they didn’t know or they weren’t aware of. It is a serious matter. But the signs of it need to be looked at very carefully.”

– Brian Hendrickson

Medical experts are not shocked that reaching his final diagnosis was a lengthy process, though. Awareness of sickle cell trait’s dangers, they say, is still developing. And because it affects a small, niche population – typically military recruits and high-level athletes – it may not be the first option to explain symptoms that can also be attributed to poor conditioning or inadequate hydration.

Like concussions, which are now being treated at all levels of sport – from high school to the professional ranks – as serious conditions after years of receiving “shake it off” diagnoses, sickle cell trait is moving through a process in which the medical community first must recognize its potential danger, then actively work to catch and treat it.

“As with any medical condition or anything in medicine, it takes a while from the initial description to where people are recognizing it and putting it into practice,” said Kevin Harris, a cardiologist at the Minneapolis Heart Institute who has studied sudden deaths in athletes related to sickle cell trait. “It takes a while, and I think that’s where we’re at with this.”

Arnold Ramirez, the team doctor at Eckerd who diagnosed Kearse with sickle cell trait, said his experience treating the condition has revealed symptoms that are stealthy and complex. The trait presents uniquely mild or severe symptoms for each individual, depending on physiology.

So where one sickle cell trait carrier may experience uncomfortable light-headedness or weakness, others like Kearse can experience debilitating cramping in extremities, making diagnosis tricky.

“It could be any of a number of things that you’re rifling through your head,” said Chris Gillespie, director of athletics training education at Samford and member of a national sickle cell trait task force. “But if you know they’re sickle cell trait and it’s in your medical file on that athlete, then it’s one of the first things you would obviously know about the situation. … Otherwise you’re guessing.”

It’s possible Kearse’s drawn-out diagnosis resulted from that lack of awareness. According to Kearse, several other options were explored: psychology, biopsies, blood tests and metabolic exams among them. He said one theory pointed to a possible myopathy – a neurological condition that causes muscle weakness and can produce cramping. But it didn’t answer all the questions.

The lack of solutions was exasperating. Kearse grew frustrated and angry. He watched teammates improving while he was stuck in neutral. After a second full-body cramping episode sent him back to the hospital, Kearse became unwilling to put himself at risk, afraid he might die if he tried.

A teammate nicknamed Kearse “Half-Man, Half-Unbelievable” because he could cramp one minute, throw down a dunk the next, then cramp up again shortly after. The health troubles led to inconsistent playing time and cast questions about toughness upon him. Kearse’s self-image was battered. The competing pressures were maddening. Teammates called him “Tripolar” as his emotions raced the spectrum. When a physician suggested midway through his sophomore year that he should quit basketball for his own protection, Kearse holed up in his room for two days and cried.

“I realized that I may not play basketball again because my body is that bad, and I know that my body is that bad,” Kearse said. “When I’m out there on the court, I feel like I’m playing against my opponents, and myself.”

Regaining Control

When Ed Hall phoned during the winter of 2009 with the news that Kearse would be transferring, Eckerd coach Tom Ryan figured it was a dead end. But when Kearse arranged for an official visit several weeks later, Ryan started to understand there was a reason for his interest in the Division II school. It was a two-hour drive from Kearse’s Fort Myers, Fla., home and close to his support network of family and coaches – people who understood him and knew something wasn’t right. Kearse needed that support because he still didn’t know what was affecting his health.

The flow of oxygen-rich blood to vital organs can be disrupted when red blood cells turn sickle, causing blood clots.

Ryan and Ramirez could see the psychological toll the unanswered questions placed on Kearse. It was apparent that his frustration led to clashes with his previous coaches. It was also apparent that he’d become spooked by his own body, driving a panic that at times was paralyzing. Kearse was tired of wondering why it was fighting him.

“He was screaming for help,” Ryan said. “He wanted somebody to tell him what the hell was going on with his body.”

Eckerd’s staff didn’t know if they could help. But they resolved to try.

Ramirez and team athletic trainer Travis Irwin put ​Kearse through a torrent of tests during his official visit. He ran on a treadmill and had numerous vials of blood drawn. They checked for rare disorders, performed metabolic tests, looked for muscle myopathies, congenital enzymes and neurological conditions. They checked for any possible diagnoses that hadn’t been explored. Sickle cell trait, Ramirez reasoned, was one possibility, and a test that was separate from standard blood panels. He added it to the list.

The results arrived two weeks later. Sickle cell trait was the only abnormality found, and the variety Kearse carried was believed to be severe. His monster finally had a name.

But that identity scared as much as it resolved.

Early tests for sickle cell are lost in the system

The NCAA’s decision to test all athletes for sickle cell trait beginning in 2010 has been praised by many medical experts as an important step toward preventing crisis.

But ironically, most current student-athletes already have had the test and didn’t know it.

All 50 states now test for sickle cell trait as part of standard screening of newborns. The exams check for rare diseases that can put infants’ health at immediate risk, including intolerance to amino acids or the more serious (and rare) sickle cell disease. But parents often are not informed of a positive sickle cell trait test for various reasons.

The parents may not have a pediatrician at the time of birth, leaving the test work to remain at the birth hospital where it never reaches a doctor. Family may relocate, but medical paperwork may not follow. Parents also may not be notified of a positive test because it is often considered a benign condition in the general population. Only niche groups like high-level athletes and military recruits tend to experience its effects.

The result: Important health information slips through life’s cracks.

“What a waste to have this data and to not be able to find the data,” said Dr. Stephen Rice, a sports medicine pediatrician at Jersey Shore University Medical Center. “What really needs to happen is for us to take advantage of the fact that this test was done.”

Dr. Kwaku Ohene-Frempong, director of the Comprehensive Sickle Cell Center, said states don’t make it a priority to notify patients of positive sickle cell trait results. Because the trait is generally considered non-life threatening, the expense and effort of informing and counseling patients is rarely supported, he said. 

But a positive test carries importance beyond athletics. It can also impact reproductive decisions, where sickle cell trait carriers might need to consider the possibility of bearing a child with sickle cell disease. So Ohene-Frempong and Rice believe the medical community should work together to ensure that newborn tests can be retrieved by doctors and prevent the data from being wasted. 

– Brian Hendrickson

His mother, Ida Kearse, was wrought with guilt. Nobody in her family had sickle cell trait, but Lance’s father lived in Canada and had never been tested for the condition. Ida searched her mind, recalling Lance’s birth, hospital stays and doctor’s visits. She couldn’t recall sickle cell trait ever being mentioned.

“I was just so down and bad on myself,” Ida said. “Could I have done something?”

The news locked Kearse in a panic. He read the horror stories about athletes collapsing and dying, their conditions discovered only during the autopsy. But one particular case raised goose bumps: the story of football player Ereck Plancher. The UCF redshirt freshman collapsed and died during a spring conditioning workout a year earlier. Sickle cell trait was later blamed.

Memories instantly flashed into Kearse’s mind, carrying him back to a recruiting visit to UCF’s football team before his senior year of high school. Then-coach George O’Leary eyeballed Kearse’s impressive physique and athleticism. “If you play football this year,” O’Leary’s haunting words echoed in Kearse’s memory, “there’s a good chance I’ll offer you a scholarship.”

The ironic circumstance consumed Kearse. He often feared for his life, but the diagnosis transformed possibility into reality.

“I was faced with a monster that I knew nothing about,” Kearse said. “It was extraterrestrial. It was like, ‘What is this that’s going on?’ I wanted no part with it.”

Kearse tried convincing himself that life offered more than basketball. He could graduate with his business management degree. He could be successful without sports. But that talk was fear overriding desire. Basketball was an essential part of his life. It turned a shy, awkward kid into a confident, joking, social young adult. He couldn’t simply let it go.

Ramirez assured Kearse that he would be safe if they carefully controlled his water intake and diet. Safely managing the condition wouldn’t be difficult. But Kearse also had psychological scars to heal. Stepping onto a basketball court felt like entering a shootout unarmed. He had trouble catching his breath; anxiety paralyzed him.

I could die doing this.

It took a year of experimenting to make Kearse comfortable again. He had to learn to pull back and become a jump shooter rather than attack the basket with relentless aggression. He had to learn to take himself out of the game when his muscles started burning rather than push himself to the point of cramping, which could keep him sidelined for days afterward. In essence, Kearse had to relearn the game.

Ryan, too, had to restructure plans, devising a rotation in which Kearse would play for three minutes, then rest. That management of time and effort could assure that Kearse wouldn’t overextend himself.

The medical staff complemented those efforts with hydration strategies and strict monitoring of his body chemistry. Before each game, Kearse receives intravenous fluids, ensuring that he will be fully hydrated by tipoff. In addition, an oxygen tank sits on the sideline for Kearse to draw from during breaks.

The strategy confronts the sickle cell trait from two ends: Hydration helps his blood flow smoothly; the oxygen helps his sickling cells recover their normal shape. The combination is like sending a delivery truck through city streets: More oxygen allows the truck to deliver more, and better hydration reduces the traffic it has to negotiate.

The process was slow, but as Kearse learned to trust Eckerd’s staff and to read the messages sent by his body, he took steady steps toward a normal game. His playing time increased, from 17 minutes his first season to 20, then 23 and finally close to 30 by his senior season’s close. In his final six games, Kearse averaged 16.3 points, shot 55 percent from the field, and played 26.8 minutes – a monumental leap forward. A year earlier, Kearse couldn’t last half the game.

For the first time in four years, he was becoming a most efficient player.

Moving on

Kearse is now his body’s foremost expert, driven to master sickle cell trait now that he knows it can be controlled.

It requires total lifestyle awareness. He carefully manages his diet; a good meal includes tuna and a protein shake. He won’t drink alcohol or caffeine, both of which dehydrate him. He laughs more now and has let go of the frustrations experienced at his previous school (“It’s not worth it because they didn’t know; I didn’t know,” he says). He speaks casually and informatively about his condition. It no longer looms like a monster. Instead, he reminds himself of an old wisdom.

“Without failure, there is no progress,” he says. “I live by that.”

His progress was recognized earlier this summer. While Kearse worked out in the gym, Ryan walked in to share a text message. He’d just received word about the school’s request to the NCAA to grant Kearse a fifth year of eligibility. Ryan played solemn: “I’m sorry,” he said, handing Kearse the phone.

Once the Eckerd staff diagnosed Kearse with sickle cell trait, they were able to devise a training regimen that helped him manage the condition and experience a normal campus life, which includes being able to play basketball without fear of incident.

The request had been accepted.

“Coach, why are you playing with me like that?” Kearse jabbed back before the two celebrated with a laugh. It felt like victory for the entire staff: for Kearse overcoming fear and severe health scares; for the coaches who took on the challenge; and for the medical staff that devised the means to treat his condition.

Healing has come physically and psychologically. Kearse no longer fears his body. In recent months, he’s become comfortable discussing his experience and advocating for the importance of awareness as the surest form of prevention. He wants others to know sickle cell trait and normal life can dance together.

It’s in that renewed vitality that Kearse found the answer to that exasperating question: Why me?

“I know why,” he says with determination. “I can help other people. I can help so many people.”