FOR HELP

To learn more about juvenile rheumatoid arthritis or other forms of arthritis, call the Indiana Arthritis Information Line at (800) 783-2342, or write to the Indiana Chapter of the Arthritis Foundation at 8646 Guion Road, Indianapolis, Ind. 46268. The phone number is (317) 879-0321.

Incurable disease can be difficult to diagnose, and patients face arduous treatments; but it's not contagious.

More than 1,000 kids in Indiana and 71,000 in the United States have it, and yet a lot of people don't know it even exists. It is juvenile rheumatoid arthritis, or JRA.

"All the time I was growing up, I never met another child with arthritis. I thought it was one of those oddity things," Janna Zeltwanger, 39, said in a recent interview with Children's Express.

She is a social worker at Kendrick Memorial Hospital in Mooresville and is a member of the board of directors of the Arthritis Foundation.

Arthritis has plagued Zeltwanger since she was 6 years old. It started when she was about to enter first grade.

"I was walking with my mom, and I just couldn't walk any more. It hurt too much," Zeltwanger said. "I think at that time I only had a 103-degree (temperature), but it still was significant, and she knew that I needed to get to a doctor and find out."

Scott Richey is the 8-year-old youth ambassador for the Arthritis Foundation. He and his mother, Peggy Richey, told what it is like when he was diagnosed with juvenile rheumatoid arthritis.

"Back then, I didn't really know what it meant," said Scott, who was diagnosed when he was 3 years old. "When they explained it all to me, I was mad."

Scott was diagnosed when he had chicken pox and didn't immediately recover from the fever. His mother had mixed emotions when they learned he had JRA.

"I was relieved, because he was so sick for about two weeks, and nobody knew what was wrong," Richey said. "They started doing all kinds of tests in the hospital for some awful, awful diseases, and we really got scared.

"We were kind of relieved to find out it was arthritis as opposed to leukemia or some of the other things that they thought he might have."

Detecting arthritis

Diagnosing arthritis can be a long and slow process, sometimes lasting years. Symptoms might be high fever, achy joints or swelling of the knees.

"Sometimes they have to go and do blood tests and they have to rule out everything else," Zeltwanger said. "Then, after several months, they might decide that that's what it is because of not seeing any other problems."

Juvenile rheumatoid arthritis can start at a joint, usually the ankles or wrists, and spread from there to other joints. It also can affect the eyes and heart as well as stunting growth.

There are four main features of arthritis. Joint inflammation is the most common and causes pain and swelling of the joints. Joint deformity is the result of inflammation. When children refuse to move the joints because of the pain, it causes the muscles to get out of shape.

Joint damage is the most crippling. Fortunately, this doesn't happen in many children. Lastly, arthritis can cause altered growth of the bones, which can make them shorter or longer or sometimes stop them from growing.

No one knows for sure what causes juvenile rheumatoid arthritis, but we do know that it is not contagious. You can't catch it from anyone or give it to someone else.

Heredity might play some part in the development of arthritis, but it is not the sole cause of the illness. The most popular medical opinion is that an inherited trait along with some other unknown factor triggers the disease.

Even though the symptoms of arthritis are widespread and well- known, there is no cure.

"It's somewhat like diabetes," Zeltwanger said, "in the sense that you can maybe control it and manage it over a period of time. . . . What they can do is treat it. If they diagnose it early enough, then they can get you on medications that will hopefully slow down the disease."

Scott has been on medicine most of the five years since he was diagnosed with juvenile rheumatoid arthritis. He also participated in a research project with his doctor in Cincinnati, trying to temporarily treat the disease with intravenous gamma globulin, the protein portion of blood plasma.

Despite taking medication every day and having physical therapy once a week, Scott told us, "Nothing can stop me hurting."