(Cox News Service) -- Her ankle was swollen. And then it wasn't. On and off, for days.

Kelly Skidmore's mother watched and wondered and worried: What the heck does that to a little girl? And what should be done about it?

When Skidmore couldn't slip on a Cracker Jack ring because the joint in her finger was so swollen, her mom knew something must be wrong.

It was. And it has stayed wrong for 35 years.

Skidmore was diagnosed with juvenile rheumatoid arthritis when she was 5 years old. She's 40 now, a wife, a mother and an energetic career woman who is the senior legislative aide to Florida state Sen. Ron Klein.

But the disease she's dealt with since childhood has ravaged her body - destroying her knees, her shoulder, her ankle and the vision in one eye.

And yet, Skidmore says, when she thinks about what could have been, she considers herself pretty lucky.

"There are so many things that can go wrong," she says. "I see people who are older, who have had arthritis for far less time and are much, much worse."

Of course, that's the version of the disease people are familiar with: The arthritis that causes your joints to ache when you're in your 40s or 50s. The arthritis that bends your back and gnarls your fingers when you're in your 60s and 70s. The "old person's disease."

It's the first thing doctors think of when their middle-aged patients complain about twinges and soreness. But juvenile arthritis continues to be misdiagnosed and its seriousness discounted, according to the Arthritis Foundation.

Right now, arthritis affects an estimated 300,000 children in the United States, and an estimated 50,000 have juvenile rheumatoid arthritis. Yet, some parents still pass off their children's symptoms as "growing pains." Some doctors still mistake the pain and swelling for cancer or a viral illness. And even for proactive families it can take several months to get a correct diagnosis.

Compounding the problem is a decline in the number of pediatric rheumatologists, a subspecialty critical to early diagnosis and proper treatment. And other rheumatologists are reluctant to take youngsters on as patients because of difficulties with malpractice and insurance, says Dr. John Whelton, a former state chairman of the Arthritis Foundation who for many years was the only area rheumatologist who would see children.

There are at least 100 different types of arthritis and, according to the Centers for Disease Control and Prevention, it affects about one of every six Americans.

The sheer number of people who suffer from osteoarthritis explains the focus on that form of the disease (doctors believe osteoarthritis affects more than 20 million Americans, and by 2020 that number is expected to reach 40 million). But it's tragic that many children aren't being properly treated, Whelton says, because arthritis can be especially damaging in young patients.

How children get juvenile rheumatoid arthritis remains a mystery. It isn't contagious, and there's no evidence that foods, toxins, allergies or vitamin deficiencies are a cause.

Researchers suspect that a virus gets into a person's genetic coding, Whelton says. And once that trigger is there, it may cause ongoing irritation, even when the virus is gone.

The disease can show up in children as young as 6 months old. For many, it starts with stiffness or swelling that comes and goes. Some become so weak that it's difficult to walk. Babies who can't communicate their discomfort may become irritable, or start crawling again. Young children may develop a limp.

Thirteen-year-old Jessica Davis doesn't remember much from when she was 2 - but she remembers the pain in her joints. And she remembers that her parents had to carry her everywhere.

When her right knee became swollen, her doctor thought it was a typical childhood bump. But the swelling didn't go down, and Jessica's parents, Matthew and Rowna Davis of Jupiter Farms, kept searching for a better answer: They got a second opinion, then a third and, finally, Jessica underwent surgery to see if she had a tumor.

She didn't. She had arthritis.

When she was finally diagnosed, Jessica immediately began chemotherapy, a common treatment for juvenile rheumatoid arthritis, and physical therapy to reduce the swelling and keep her flexible. Still, for a while there was speculation, she says, that she would be in a wheelchair for life.

"It spread like wildfire, all throughout her body," says Jessica's grandfather, Max Davis, who is now senior vice chairman of the Arthritis Foundation Mid East Region.

Jessica is in remission now - and has been off medication since October. Her hands still hurt her occasionally, and it's hard to get the pretty rings she loves to wear to fit over a couple of her damaged digits. But thanks to aggressive treatment from a pediatric rheumatologist, she is as active as any other girl her age. Maybe more so: She is an avid horsewoman and participates in several sports.

When she fractured her finger a while back playing volleyball, she insisted on staying in the game until the coach became alarmed by the swelling and she ended up in the emergency room.

"I was out for the rest of the season," Jessica says. "I was really mad."

The only accommodation Jessica gets at St. Mark's Episcopal School, her mother says, is that she is allowed to have two sets of books, so she doesn't have to lug a heavy backpack home every day.

If Jessica and her grandfather weren't such outspoken advocates for arthritis awareness, her friends might not even know she has it, she says. And she expects to have a normal adolescence.

That's more than Skidmore could hope for when she was in school.

Eye problems are not uncommon among children with arthritis; they can result from inflammation of the iris or the medications used to treat the disease. By the time she was 12, Skidmore was losing the sight in one eye. At 14, a cataract had grown over it.

If the eye were removed, she learned, the socket would shrink. So instead, she had the lens scraped to keep it from looking cloudy. "It ached," Skidmore says. Eventually, she began using a contact lens with a pupil painted on it to cover the problem.

Her height also was affected - not by the arthritis, but by cortisone, a powerful anti-inflammatory, which when used in high doses over a long period of time can stunt growth and weaken bones. (She also used to get gold injections - which doctors often prescribed to relieve arthritis pain.) Skidmore is just 4 feet 10 inches tall, not much taller than her 8-year-old daughter, Mary Alice.

Now, she sees her small stature as a blessing: Less size, less pain, she says. But in her teen years, it was harder to deal with looking different. That was really the only time she felt sorry for herself, says Skidmore, who remembers wanting to go to the prom, and crying to her mother that no one would take a girl with arthritis.

At first, her mom's answer was, "It could be worse," Skidmore says. But then she simply nodded and held her and said, "I know."

And that has been her blessing, Skidmore says, "a family that understands the limitations but doesn't pity me." The only thing her parents did let her get out of, she says, was physical education class.

Her family's positive attitude is probably why she doesn't dwell on her disabilities, she says. Instead of focusing on the pain, she thinks of her arthritis as a mechanical difficulty. "I will tell (my body), `You have to work because I have to get up that hill."'

And when parts of her body stop working, she's not averse to replacing them.

During the years, as her joints deteriorated, Skidmore was in constant pain. Still, she fought the idea of having surgery to replace her damaged joint with a plastic and metal prosthesis. Then her doctor told her she wouldn't be able to carry the extra weight of a pregnancy without stabilizing her knee, and she gave in.

It was a wonderful change, Skidmore says. "I had been a pain because of my chronic pain. I was in a bad mood for 20 years. It changed my outlook and my personality."

Insurance covers most of the cost of Skidmore's four medications, fortunately, including Enbrel, a genetically engineered injectable drug that halts the progression of joint damage and costs $1,000 a month.

Many arthritis treatments such as Enbrel, Remicade and Humira are expensive, Whelton says. But the sooner arthritis sufferers look into those treatments, the better off they'll be.

"There is a window of opportunity early in the disease to turn it off. Later, after the destruction of the joints already has occurred, you're playing catch-up," he says. "Some people come in with deforming arthritis by the time they get in to see me."

Doctors also encourage their young patients to eat right and get physical therapy to help manage their symptoms. Exercise helps keep joints strong and flexible. And group activities keep children from feeling isolated because of their ailments.

Children with arthritis can grow up to lead a normal, active life, Skidmore says. But she urges parents - as well as adults with the disease - to be persistent, even pushy about getting the help they need.

"Go to your doctor and talk to your doctor and find what works for you," she says. "It's important to know that you don't just start worrying about this when you're 65."

Kim Folstad writes for The Palm Beach Post. E-mail: kfolstad(at)pbpost.com

How can the family help a child with JRA?

There are several things a family member can do to help a child with arthritis do well physically and emotionally:

1. Treat the child as normally as possible.

2. Be sure the child receives appropriate medical care, including eye and dental care.

3. Encourage exercise and physical therapy for the child.

4. Work closely with the school to develop a suitable lesson plan for the child and to educate the teacher and the child's classmates about juvenile rheumatoid arthritis.

5. Explain to the child that getting arthritis is nobody's fault, and it isn't a punishment for something he or she did.

6. Consider joining a support group. The American Juvenile Arthritis Organization runs support groups for people with juvenile arthritis and their families.

7. Work with therapists or social workers to adapt more easily to the lifestyle change arthritis may bring.

- Source: National Institute of Arthritis and Musculoskeletal and Skin Disease

What parents should know:

- Juvenile arthritis is a general term for all types of arthritis and related conditions that occur in children.

- Nearly 300,000 children under the age of 17 are affected by juvenile arthritis. Juvenile rheumatoid arthritis affects up to 50,000 children.

- What are the symptoms? Signs vary from child to child, and even day to day. The most common features are joint inflammation, joint contracture (stiff, bent joint), joint damage and/or alteration or change in growth. Other symptoms include joint stiffness following rest or decreased activity level, and weakness in muscles and other soft tissues around involved joints.

- Go to www.arthritis.org for more information.

Copyright 2003 Cox News Service. All rights reserved.