Playing through the pain: Juvenile arthritis unable to stop Hilton Head Prep star


Published Friday, January 15, 2010
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One moment, Becky DeRose was spotted up in the corner, ready to show off her specialty, to accept the pass and unleash another deadly accurate 3-point shot. The next, she was in a heap on the floor after going up for an errant pass and rolling her left ankle upon landing.

"You OK, Becky?," Hilton Head Prep coach Bob Sulek asked aloud as his senior guard ran back to the defensive end, wincing slightly and favoring that ankle, yet nodding to affirm she could stay in the game.

The Dolphins have come to expect that toughness from Becky, who is no stranger to playing in pain. In fact, she doesn't know anything different.

Becky was diagnosed at age 2 with juvenile idiopathic arthritis (known at the time as juvenile rheumatoid arthritis), a condition that causes almost constant pain in her left ankle, even if she rarely lets on. When pressed by her club soccer teammates years ago, Becky's struggled to describe the sensation in her ankle, the perpetual pain that has simply become part of her life.

"The only thing I could say is that it feels like a nail is digging into your joints," she said. "It's constantly there, and sometimes my ankle just stops moving."

Yet it rarely stops Becky. She is in her second year as a starter on Prep's basketball team, which is ranked first in SCISAA Class 3-A and on course for its third state title in the four years she has played on the varsity team, and she is a starter on the Dolphins' soccer team, with which she already has won a state title, as well.

She has never missed a game because of her arthritic ankle, and has missed only one practice because of it in four years of varsity sports at Hilton Head Prep.

"She's an inspiration to everyone," said Kathleen Blum, who has played basketball and soccer alongside DeRose for years. "You can see the pain in her eyes, and you can see the tears coming down her face sometimes, but she has that fight inside of her that she's not going to come out of the game just because of the pain. She's going to fight right through it and never back down."

EARLY DIAGNOSIS

The fight began when Becky was only 2 years old. It was then that a new pair of shoes salvaged her athletic career, and perhaps much more.

"My mother had bought her a brand new pair of shoes, and when I was putting the shoes on her, she kept crying," Becky's mother, Robin, recalls. "I finally looked at her ankle, and it was swollen."

After a trip to the pediatrician, it was presumed Becky had sprained her ankle, which was easy enough to believe -- "Becky was always rough and tumble," her father, Bob, said -- and her left ankle was placed in a cast. But when the cast came off, something wasn't right. She saw an orthopedist, who recommended a trip to see a specialist, Dr. Richard Silver at the Medical University of South Carolina in Charleston.

It was Dr. Silver who made the diagnosis: Arthritis.

The good news was they caught it early, before the disease did too much damage to Becky's ankle or her eyes -- uveitis, an inflammatory condition in the eyes that can lead to blindness, is a common symptom -- and that Becky's left ankle was the only joint affected. Symptoms later spread to her right elbow, but a cortisone shot stopped the disease before it could do any damage.

"The key to success is to make the diagnosis early and treat it aggressively at the onset so you can prevent damage from accruing," Dr. Silver said, "damage that would cause problems later in life."

Damage that would have kept Becky off the basketball court and the soccer field. Damage that might have left her in a wheelchair or stolen her vision.

"When we were first told, the chances of her being in a wheelchair were very real," Bob DeRose said. "We're playing with the house's money. Becky is playing sports, and win or lose, I'm already feeling pretty good about it."

A FAMILY AFFAIR

The trips to Charleston became something of a family field trip, starting as weekly visits and slowly dwindling as the medication did its job. At first, the entire family made the trip, but that ended abruptly when Becky's brother, Mac, decided he'd had enough.

"There was one point where Becky screamed out in agony, and (Mac) was at a young age and his closest friend in the world was his sister," Bob DeRose recalls, estimating that Becky was 3 and Mac was 5 at the time. "That was the point where he didn't want to go anymore, so the family split up. I stayed home with him and Robin continued to make the trip up."

Robin tried to make the trips as pleasant as possible for Becky, who wasn't fond of the needles used to draw her blood nor the eye drops that helped keep the uveitis at bay, so mother and daughter always made sure the doctor's visits were followed by shopping junkets.

"We started out going to K-Mart," Becky said, "and then we upgraded to Walmart, and then we upgraded to the mall, and then we started going to the flea market, and now we go downtown."

Dr. Silver became part of the family. He made it a point, and still does, to go to Becky's basketball and soccer games when the Dolphins play at Porter-Gaud in Charleston. He found a great personal reward in seeing Becky play at such a high level in spite of her arthritis. He made her, for all intents and purposes, the poster child for juvenile arthritis, the example of what is possible with the correct treatment.

In light of their gratitude, the family wanted to give back to MUSC and Dr. Silver. Three years ago, the Becky DeRose Endowed Lecture in Rheumatology was founded. Becky has spoken at some of the lectures, giving students and interns the opportunity to hear her story first-hand.

"The family's support has been awesome, and it's meant a lot to us at MUSC," Dr. Silver said. "She's done her bit to sort of raise awareness both in the Hilton Head community and here at MUSC."

After more than three years of giving herself weekly injections of Enbrel, a revolutionary drug approved for widespread use in 1998, Becky's arthritis went into remission and the trips to the doctor were reduced to annual check-ups.

But the residual damage, though minor on a scale of the havoc arthritis can wreak, continues to cause problems.

"Even though she's in remission, you ask the doctor why she's still in pain, and he says she just has to quit playing (sports)," Robin said. "And she looks at him and says, 'Well I'm not going to do that.' And it was like that from the very beginning."

NO MORE PRETTY SHOES

Becky DeRose doesn't really do regrets. More accurately, she doesn't allow her circumstances to force them upon her.

She can think of only two things in life that her arthritis prevented her from doing -- taking ballet and wearing "pretty shoes" -- and neither seems terribly fitting of her personality at age 18.

As soon as it was clear that playing sports would not cause further damage to her ankle, that there was no harm in playing as long as she could tolerate the pain, Becky's athletic career was off and running. She started in gymnastics at age 6, moved on to soccer and basketball at 9, and even played volleyball in middle school.

"Sure, we worried that she would hurt herself," Robin DeRose said. "But we figured it would be better than sitting around feeling sorry for yourself, and she really wanted to do it."

Unlike her desire to dance or don pretty shoes, Becky's drive to play sports has never waned.

"I love the competition," Becky said. "If I didn't even get playing time on my basketball team or my soccer team, I would still be on the team, just because I love the competition. I love watching sports; I love being a part of sports. I don't think I could ever take that out of my life."

That determination has served to inspire those who know her best.

"I know I could have never done what she has," Bob DeRose said. "To love sports so much that you play and practice knowing that you will need to sleep with the heating pad around your ankle because of it is something that has amazed me every day."

'SHE'S A FIGHTER'

The tournaments are the worst. The pain in Becky's left ankle is always worse the day after a game, when the adrenaline has worn off, so playing on back to back days is a painful experience.

"When I'm playing, I can definitely feel it, but it's more when I stop that it hurts," Becky said. "The tournaments are the hardest, because the day after games is always the worst. That's when I wake up and it's hard to stand up."

Yet every day, there she is, working to get better right alongside her teammates. Through hard work on the basketball court, she quickly developed from a role player as a freshman into a starter as a junior and a captain this season.

"She's done some amazing things," said Sulek, who is notorious for demanding maximum effort from his players. "When I first knew her, I never thought she would be more than just a back-up -- come in a play a couple of minutes, she can shoot against a zone -- but she has been a two-year starter for us and has two state championship rings. And surprisingly she can play very good man defense. She has to use some intelligence, because the quickness isn't there. She's got to take angles and be smarter than everybody else."

Because of her toughness, her effort and her attention to detail, Becky's condition often goes unnoticed. Aside from the relatively inconspicuous brace on her left ankle and the ice pack wrapped around it after games, she leaves few clues, fearful that others will think she uses her arthritis as an excuse for special treatment, which by all accounts, couldn't be farther from the truth.

"She never brings it up, we never bring it up," Blum said. "It's only when she's really hurting that we can see it or know about it, but most of the time we never even realize it because of how hard she plays. It's never been a factor. She plays right through it. Sometimes it holds her back, but that's on rare occasions.

"She's a fighter and she always will be."

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