LIVING WITH ARTHRITIS: PAIN FOR WHICH THERE IS NO CURE

To the naked eye, Allyson Herbst is a typical, bouncy 6-year-old child who loves to paint, draw and do other arts and crafts.

But Allyson suffers from juvenile rheumatoid arthritis, which at times, her parents say, can make her -- and them -- pretty cranky.

"She was one of the crabbiest children up until the time she was diagnosed and got started on her medicine," said Sydney Herbst, Allyson's mother. "For the longest time we thought it was just a behavioral thing."

But Allyson's grandmother first noticed her granddaughter's swollen left wrist.

"We really hadn't noticed until then," said Sydney Herbst. "We thought she must have just fallen on it or hurt it while she was playing."

But when the swelling did not go away, as do other childhood injuries, the Herbsts began to investigate.

First, they took Allyson to their family doctor, then went through extensive testing and physical therapy, and ended up with an adult arthritis specialist. The specialist sent the Herbsts on their way to Columbia, where they found a pediatric rheumatologist who could give them the answers they had been looking for, but didn't really want to hear.

Allyson does not have the full range of movement in her left wrist that she does in her right. Her legs also cause her some pain from time to time, her parents said.

"The doctor stretched her out on the table at the hospital, and we could see that one of her legs had grown longer than the other," said Charlie Herbst, Allyson's father. "Due to the nature of the disease, more blood is circulated to joints stricken with arthritis, which causes accelerated growth of the bones.

"Allyson had to wear a special shoe with a quarter-inch lift on her right foot for about two years," he said. "The doctor said her spine might not grow straight."

Since their daughter was diagnosed with JRA a little more than three years ago, the Herbsts have learned much about the disease. Allyson is now taking a version of children's ibuprofin -- an anti-inflammatory drug -- four times a day.

"Our first question to the doctor after he told us was will our other children get it," said Sydney Herbst. "They told us they don't exactly know."

But statistics were on the Herbst's side. Of the 300-plus juvenile patients being treated for JRA at the hospital, only a handful were of the same family.

In general, the Herbsts consider themselves and their daughter very fortunate. Although she has her "not so good days," Allyson is able to play with other children in gym class, is upwardly mobile and enjoys dance lessons her parents take her to every week.

"Our doctor encouraged the activity," said Sydney Herbst. "But we have cautioned her gym teacher that she bruises very easily because of the medication she is on."

Allyson wears a splint on her left hand when she sleeps at night, to keep her from curling the hand underneath her.

"We've gone to retreats for families with children with JRA and have seen kids who have it much worse than Allyson," said Sydney Herbst. "It just makes us realize how truly fortunate we are to have her condition under control."

JRA is a non-curable, but treatable, childhood disease.

"It usually stops by the time they are young adults, but there is no way of knowing how long it will last, or what kind of damage it can incur before it runs its course," said Sydney Herbst. "Some children are left without the full range of motion in joints, joint replacements, surgery or worse.

"We're just very lucky that we caught it when we did."

But not everyone is as lucky as the Herbst family in dealing with the painful, debilitating disease, for which there is no known cure.

"Sometimes the only comfort we can offer people is the hope for a cure and better treatment," said Charleen Linn, a spokesperson for the Regional Arthritis Center at St. Francis Medical Center. "We are all striving for a cure."

In the meantime, the state has funded the center -- which serves 18 counties in Southeast Missouri -- to deal with the pain and suffering people feel in their joints and in their hearts.

"We hold seminars, send out information to people who request it, have aquatics programs and other forms of social and physical treatment for people with arthritis," Linn said.

For the past seven years, Linn and other volunteers have held aquatics classes at the Victorian Inn pool for people with arthritis. The group cannot use the larger facilities of the Cape Central pool because the water is too cold, Linn said.

"We go through a very gentle range of exercise motions in the water," she said.

"Through programs like our aquatics programs and our monthly support group meetings, we are trying to break the cycle of pain," Linn said. "We're not doctors, although we do have them come in and speak to the group regularly, we are just trying to help other people live an easier life."

There are an estimated 5,000 people in Cape Girardeau with some form of arthritis. Once in seven people -- and one in every three families -- is affected by the incurable disease. Women are twice as likely to develop arthritis than are men.

"Every case is different," said Linn. "That's why we stress the need to consult a doctor to develop and individualized treatment program.

"Early diagnosis is very important," she said. "The sooner a person is being treated for the disease, the quicker they can bring it under control and try to live as normally as possible."