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Taking it to the dance floor

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Posted: Tuesday, November 1, 2011 3:00 am

As the clock counted down to midnight on the eve of Katelyn Sims' 21st birthday, she taught a club to line dance.

At :08, a club in downtown Gainesville known for line dancing, she teaches throngs of people how to groove to the music and stay in step with the rest of the crowd.

Sims, a student at Santa Fe College, also teaches country line dancing group-fitness classes at the UF Student Recreation and Fitness Center.

She interns for Ted Yoho, a political candidate running for U.S. Congress.

Sims also wasn't supposed to live past the age of 12.

At first, when Sims was repeatedly getting sick at 4-and-a-half years old, the doctors thought it was pneumonia.

But after seeing 27 different doctors in two years, they came up with a new diagnosis: cystic fibrosis, an inherited genetic disease in which the body produces a sticky mucus that affects the lungs and digestive system and causes potentially fatal problems.

Cystic fibrosis affects about 30,000 people in the U.S. and about 70,000 across the globe, according to the Cystic Fibrosis Foundation website.

The thick mucus produced by the body can clog the lungs and cause infection, as well as prevent the body's natural enzymes from helping in the breakdown and absorption of food.

Sims was diagnosed with the double delta F508 mutation of cystic fibrosis, which affects 50 percent of those with the disease, said Claudia Werner, executive director of the Cystic Fibrosis Foundation North Florida office.

Sims has spent almost three years of her life in hospitals, said her mother, Leisa Sims. She missed 91 days of her senior year in high school due to health problems.

She takes regular tests to ensure her pulmonary system is functioning properly. If her scores go down, she goes to the hospital for a 10- to 14-day stay to help rejuvenate her system.

The hospital trips work, usually raising her health in that area by 10 percent. But that doesn't mean the stays are fun.

After years of sleeping in hospital beds and eating the cafeteria Jell-O, Sims has no problem telling her caretakers the way she works.

She likes to stay up all night when she's in the hospital and sleep through most of the day.

She likes the nighttime nursing staff better, and the schedule works for her.

So if doctors know what's good for them, they'll stay out of her room before 11 a.m.

Once, a doctor came to check her health at 5:45 a.m.

Sims woke up and told him to turn off the light and come back later. He returned at 6 a.m. She told him to get out again.

When the same doctor came back early in the morning a day or two later, Sims threw a soda can at him.

"I warned him twice," she said.

Sims has surpassed doctors' expectations for her lifespan, but she hasn't remained untouched by the death cystic fibrosis can bring.

As a child, she spent a lot of time at Wolfson Children's Hospital in Jacksonville. There were four other children with cystic fibrosis who frequented the hospital.

Every time she found herself stuck in a hospital room for treatment, at least one of them was there with her.

Their friendship made the stays more bearable. They got into their fair share of mischief.

They would sneak off of their hospital floor, leaving one person behind to play lookout.

She and her friend Jeremy were especially close and especially mischievous.

"We were little hellions at that hospital," Sims said.

Once, they were writing on the door with foam sanitizer when Jeremy decided to set a lighter on it.

The door caught on fire.

With cystic fibrosis, cackling can lead to severe coughing. So there Sims sat, laughing and coughing as Jeremy tried to wipe the flaming sanitizer off the door before any staff members saw them.

It was Easter week in 2009 and Sims was in the hospital when she heard the news. Family and friends were supposed to visit for dinner that day, but nobody came to the room, not even doctors. Someone came in to bring her a lunch tray and nurses checked on her occasionally, but that was it.

When a nurse came in, Sims told her, "Wait. What is it?"

"Nothing," the nurse said. And she left.

When her mother walked in later that day, she could see it on her mom's face.

Sims told her not to hide the truth. That would just make it worse.

Ben had died. He was the first of the five to go.

Sims usually fell fast asleep at the hospital. The night before she heard the news, she had the hardest time sleeping.

The last of her four friends died in April 2010.

Sims knows her life might have an early expiration date because of her disease, but she doesn't regret it.

"I think if I didn't have it, I'd be a different person," she said.

The disease leaves an imprint on the way she lives her life each day. She has to take six pills before she eats meals and between three and five of them before she has a snack to keep her digestive system functioning properly.

"If not, my belly will swell up, and I'll look like I'm knocked up for a couple hours," she said.

But she also knows many opportunities have opened up because of her struggles with cystic fibrosis. She's taken advantage of those opportunities and given right back to the cause by advocating for a cure.

Sims has competed in pageants for most of her life, winning her first at 2 years old.

In March 2009 she won the title of Strawberry Queen in Starke, her hometown. She helped organize a Great Strides walk, a Cystic Fibrosis Foundation fundraising program.

The Cystic Fibrosis Foundation wants her to be a national spokeswoman for the organization, but Sims wants to wait until she finishes college.

She's given speeches on her experience living with cystic fibrosis, including one at a tailgate for a Jacksonville Jaguars football game that she gave in front of 3,000 people.

"She does a lot to raise awareness, and she's a ball of energy," Werner said. "She's always looking to do more. I like the fact that she doesn't want to rest on her laurels."

After she graduates, she thinks she might want to be a lobbyist and fight for more support of cystic fibrosis research.

She is also considering working in the public relations department of the Cystic Fibrosis Foundation, where she can continue her advocacy.

One day, if she and other supporters fight hard enough, they may even find a cure to the disease that she has lived with for most of her life.

"We realize that there might not be a cure for us," she said of other people her age or older who have the disease.

But that doesn't mean she shouldn't work for it.

"If I put every effort forward, I can't look back and say, ‘I wish I tried'," she said.

The Cystic Fibrosis Foundation has already submitted a new drug that could help cure a form of cystic fibrosis that affects about 4 percent of people with the disease.

The organization is also working on a treatment that could help people like Sims who have a double delta F508 mutation or even people with one delta F508 gene - a condition that affects 90 percent of the cystic fibrosis population, Werner said.

The foundation's research could ultimately make it possible to halt the disease in its tracks, allowing young children diagnosed with cystic fibrosis to have a normal lifespan.

The treatments could help adults with cystic fibrosis as well.

"For people like Katelyn, what we're working on has the potential of stopping her disease in its tracks," she said. "If this medicine that we're working on could just suspend it for her, then she could be just like she is forever."

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