There are 200,000 children in the U.S. with juvenile arthritis, but when Linda Nielsen was growing up for all she knew she was the only kid in America with the disease.
She didn't know anybody else who had to take a hot bath every morning in order to feel good enough to go to school. She didn't know anybody else who was sometimes too tired to play outside at recess. Wasn't it just old people who were supposed to feel this way?Juvenile arthritis can be a lonely disease for a child, and one that can take control of you if you let it, says Nielsen. But you can get control back.
That's what Nielsen, now 29, will tell the kids and their families who will participate in the second annual Juvenile Arthritis Education Fair.
The fair runs from 10 a.m. to 3 p.m. on Saturday, Sept. 19, at Western Rehabiliation Institute, 8074 S. 1300 East in Sandy.
"Learn as much as you can about arthritis," Nielsen advises the 2,000 Utah children who have juvenile arthritis. "Choose a good diet, get enough rest, find understanding friends, and don't take it personally" when someone doesn't understand about the disease. "Everybody needs to be educated."
Because children with arthritis usually don't look handicapped, both classmates and teachers may not understand the fatigue and other limitations that may come with the disease. Teachers may assume that a child is lazy. The Utah chapter of the Arthritis Foundation, which is sponsoring Saturday's education fair, hopes that area teachers will attend to learn more.
Conner Watts of Park City is proof that medication and a good attitude can often prevail over juvenile arthritis.
Conner, 14, had his first flare-up of arthritis at a T-ball game when he was 6. He couldn't figure out why he seemed to be running in slow motion that day, and for a while even his doctors didn't know what was wrong.
He missed most of the first grade but then the disease seemed to disappear. When he was in the seventh grade, however, it came back more persistently. He missed part of that school year and when he returned to junior high the next year it was in a wheelchair.
Since he couldn't play basketball anymore, Conner turned to handicapped skiing, a balancing act involving a bucket seat on one ski. He also is now a certified scuba diver.
This year, with medication controlling the inflammation and pain, he no longer needs the wheelchair. He still can't run, but he can play tennis if the ball comes somewhere in his general direction. He plans to ski again this year on Park City's Disabled Ski Team.
"I'd rather not have arthritis," says Conner. "But I guess it's OK with me. It all depends on how you think of it. You can say, `Oh, I have arthritis, I'm dead.' Or you can just change your attitude toward the world."
Conner credits his arthritis with his 4.0 grade point average and his honors classes (since he couldn't do school sports last year, he figured, he might as well study). And he sees other changes as well.
"It's kind of made me a better people person. I've been around a lot of handicapped people. If you're skiing and a blind person says, `It's a great day for skiing,' it helps you try harder 'cause you see how hard they're trying."