Crohn's disease doesn't stop dancer

Crohn's disease doesn't stop dancer

November 30th, 2010 by Kelli Gauthier in News

It's not surprising that 18-year-old Kaylee Ann Disterdick is a ballerina.

Her slender 5-foot-8 frame, sparkly brown eyes, red hair and effervescent smile exude natural grace and poise.

But five years ago, the healthy dancer's body started working against her. Her stomach always seemed to be upset, and she'd make frequent, long trips to the bathroom. She began losing weight and, by the summer before her eighth-grade year, she was down to 83 pounds.

"It was really scary, especially being 13, and not knowing why this started," she said.

A doctor's visit confirmed the teenager had Crohn's disease, a disorder that causes inflammation of the small intestine and large intestine, also known as the colon. Its cause is unknown and it can only be treated, not cured.

Staff Photo by Angela Lewis/Chattanooga Times Free Press Kaylee Ann Disterdick dances in her Chattanooga Ballet class Monday evening. Crohn's disease has presented challenges for the teenager.

Although relieved to have found the cause, Disterdick immediately was hit with the news that she no longer would be able to dance and faced the possibility of a feeding tube, invasive surgery and a colostomy bag.

That diagnosis didn't sit well with her, so she decided to not believe it.

Based on research and her own personal experience, she realized that eating gluten -- a wheat-related protein -- made her feel worse, so Disterdick, who already is lactose intolerant, cut it out.

"I think it's made me a lot more mature, just by being so disciplined with diet," she said. "There's not many teenagers who don't eat pizza and cupcakes."

Disterdick, a senior at Soddy-Daisy High School, also has realized that stress exacerbates her painful symptoms so, in an effort to avoid surgery, she's had to learn to sometimes say, "no." She quit dancing at a prestigious studio last year to come back to the more relaxed Chattanooga Ballet and must skip social activities with friends when she's sick.

Despite having to take occasional time off from dancing during Crohn's flare-ups, Disterdick continues to persevere. She won Soddy-Daisy's Junior Miss pageant and was first runner-up in the statewide competition. Both times she danced to a recording of herself singing.

"[I kept dancing] because then I wasn't Kaylee with Crohn's disease or Kaylee the skinny, undernourished girl, I was a beautiful dancer," she said.

CROHN'S DISEASE

"Crohn's disease is a chronic disorder that causes inflammation of the digestive or gastrointestinal tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon ... [Symptoms can include] persistent diarrhea ..., crampy abdominal pain, fever, and, at times, rectal bleeding. Loss of appetite and subsequent weight loss also may occur."

Source: Crohn's and Colitis Foundation of America

CROHN'S FUNDRAISER

As part of her senior project, Kaylee Ann Disterdick is holding a bowl-a-thon fundraiser for the Crohn's and Colitis Foundation of America at the Holiday Bowl in Hixson on Saturday from 2-4 p.m. For more information, contact Kaylee Ann at 423-413-7469, or make a tax-deductible donation to CCFA at ccfa.org.

Nancy Zuber, the senior counselor at Soddy-Daisy, recently nominated Disterdick to be honored at a Hamilton County Schools student recognition program.

"She's overcome so many obstacles to be able to do what she's done. Even though she'd been told she couldn't, she wanted to do it so badly," Zuber said. "She's just so kind and nice to people. What makes her exceptional is just her goodness. She's real upbeat and never complains."

Disterdick's mother, Desiree, said she looks up to her daughter's courage and determination.

"I've always admired her, but it's made me in awe of her," she said. "She's such a gentle person, but she's gotten very strong about this."

And although she wishes she could find a cure, or at least take the disease for her daughter, she said her family is hopeful about the future. Kaylee Ann is about to be part of a research project at Emory University in Atlanta to help find a cause for Crohn's. The disease often is hereditary, but no one in Kaylee Ann's family has had it.

"She said if it was something that could help find a cure, she'd do it," her mother said.

As for Kaylee Ann's immediate concerns, she's looking ahead to graduation -- after getting the only B of her entire life in Advanced Placement European history her sophomore year, she's taking the class over this year in hopes of earning an A and a 4.0 grade-point average.

When she's done with school, she hopes to attend Belmont University in Nashville to study nursing and dance, and eventually become a certified nurse anesthetist.

"I want to do missionary nursing ... my nurse anesthetists have all been so good to me," she said. "I can be that for somebody else."