Juvenile arthritis afflicts 1 in 1,000 children

It's not easy being a teenager with arthritis. Until Saturday, Sasha Zimmerman had never met someone her age who knows what it's like to be in her shoes. She has juvenile rheumatoid arthritis.

"Most kids don't understand," she said. "They look at you and don't see anything wrong."

"I usually feel embarrassed and don't want to talk about it," said Sasha, a 16-year-old from Chowchilla.

It's a misconception that only old people get arthritis.

About one out of every 1,000 children has arthritis, said Dr. Dowain Wright of the rheumatology practice at Children's Hospital in Madera County, Calif. The hospital treats more than 350 children with the disease, and 70 with lupus, a related disease.

Better medicine and treatment have kept many children with such diseases out of wheelchairs, said Wright. But a lack of awareness still leaves many children suffering for months or even longer before they're properly diagnosed, which can mean further and serious damage, he said.

The C.A.R.E. (Childhood Arthritis and Rheumatic Disease Education) Family Day tries to treat another illness-isolation. Young people shared stories of sickness that they had kept hidden from classmates. Parents talked about the difficulty of raising children with health problems.

"They think they're the only ones with the disease before they come here," Wright said. "When you come here, you realize you're not alone."

Sasha and others who have childhood arthritis had a chance to bond Saturday on the San Joaquin River. About 200 people showed up for a gathering at Scout Island in northwest Fresno, Calif., organized by Children's Hospital Central California and the Arthritis Foundation.

Young people sat in a circle on the lawn, smiling in recognition as they listened to one another. They might have been any group of teenagers at the park, except they were talking about things like joint pain, kidney failure and blindness.

Sasha lost her sight for two months last year, a symptom of the disease, she said. She always has to wear sunglasses outside.

She liked having the chance to share her frustrations, but also enjoyed just being around other young people. Her illness has forced her to be schooled at home.

Marissa Reyes, 15, nodded in agreement. She also had to take independent study classes at home because her arthritis kept her out of school in Merced, Calif. Kidney problems meant she was hooked up to a dialysis machine for hours every night.

"It's not easy to talk about," Marissa said.

Nearby, Kristen Pimentel of Fresno enjoyed watching her 5-year-old daughter, Abigail, slide with other children. That may be a common sight for some parents, but Abigail's arthritis can keep her bed-ridden; she missed 25 days of school last winter.

She has to take medicine regularly, including weekly shots that make her throw up. She's had surgery twice.

In the winter, the pain is "bad, very bad," Abigail said.

Emily Nicks, 8, also enjoyed a chance to play. She has a rare rheumatic disease that kept her in a wheelchair until recently.

"It's not life-threatening, but it is 100 percent life-altering, and it can't be cured," said her mother, Donnell.

Emily got a butterfly painted on her face Saturday, which made her smile. She enjoyed seeing people she normally comes across at the hospital.

"I like it a lot," she said. "I get to hang out with my friends, and I get to hang out with my doctor."