Life is full of little annoyances: your shrill alarm clock, your stuck locker door, the trampling herd rushing up the stairs past you as classes change. It can be stressful–tests, zits, passing driver’s ed, that really awful airball you threw during the basketball game in gym class (yes, it was coed).
But what if you’re one of more than 71,000 young people in the United States who have a painful disease called juvenile rheumatoid arthritis (JRA)?
Your alarm clock may sound at the crack of dawn because you must have a long soak in a warm bath just to be able to move your stiff joints and get going. Your locker may need to be equipped with a special device just so you can open it. You may have a special schedule because you have to avoid crowded hallways altogether (and that’s not so cool, either).
You may need special help in what seems like almost anything you do–from eating in the cafeteria, to taking notes, to taking tests, to learning to drive, to having to go to a special PE class separate from most of your friends.
What’s more, your juvenile arthritis is a chronic condition. JRA lasts for years, unlike illnesses such as chicken pox that you have once and not again.
A person with JRA lives with pain and stiffness that lasts for days, weeks, or months. Then it goes into remission, a period when the disease isn’t cured but instead–thankfully–seems to disappear. This, however, doesn’t last: At some time, the remission ends, and JRA once again enters the picture with a flare, the term for a recurrence of the disease.
For most young people with JRA, despite these ups and downs, there is a silver lining in the “juvenile” part of juvenile rheumatoid arthritis. They outgrow their condition; by the time they’re adults, most will be free of it altogether. And of those with JRA, a large majority adapt to their disease and are able to keep up well with everyday activities. For others, JRA is a significant lifelong disability.
In the meantime, though, JRA requires tough adjustments, not only by people who have it but by their family, too.
Target: The Joints
JRA targets the body’s joints, places where two bones come together, such as the knees, shoulders, elbows, wrists, or ankles. At a joint, the ends of the bones are covered by cartilage that keeps the bones from grating together. Lining the space around the joint is a thin membrane called the synovium, which secretes a clear, egg whitelike fluid that allows the cartilage to slide without friction and the joints to move.
With JRA, the synovium becomes swollen and overgrown and produces too much fluid. The result is inflammation–stiffness, swelling, pain, warmth, and redness of the skin. These same symptoms are seen in arthritis in older adults, but JRA is a different disease.
Three Different Forms
JRA takes three different forms. Up to half of all children with JRA have polyarticular (meaning “many joints”) JRA. This type of JRA usually affects the small joints of the fingers and hands, although it can also strike the body’s weight-bearing joints such as the hips, knees, ankles, feet, neck, and jaw. It’s often felt in the same joint on both sides of the body.
Up to 40 percent of all children with JRA have pauciarticular (meaning “few joint”) JRA, which usually affects large joints such as the knees, ankles, or elbows and usually only strikes a joint on one side of the body. Children with pauciarticular JRA run the risk of developing an eye disease called iridocyclitis, an inflammation of the eye that can cause serious vision problems. This is why doctors usually recommend regular eye examinations for children with any type of JRA.
The least common form of JRA is systemic JRA, which can affect a person’s internal organs as well as the joints. Its most common feature is high fever that may rise sharply one or more times a day, along with a rash and inflammation in many joints.
Some forms of juvenile arthritis may have a hereditary link, but this is not considered to be the single cause. Some researchers feel that the trigger may lie in one or more viruses that cause the body’s immune system to turn on the body rather than rally to its defense. Ruled out as causes are such factors as diet, injury, birth defects, or a cold, damp climate.
Finding the best treatment for JRA usually involves a strict daily routine that revolves around a combination of exercise and medication. It’s only natural for a person with stiff and hurting joints to be reluctant to move them. But if a joint isn’t moved, the surrounding muscles and tissue become weak and tight, and they may shorten. The bones that form the joint pull out of line, creating a deformity called a contracture. This is why exercise that keeps the joints moving fully and the muscles strong is an important part of any treatment for JRA.
Medications are based on the type of JRA and the symptoms. Drugs are selected to relieve pain and inflammation in an attempt to prevent and control joint damage. Fast-acting drugs aim to reduce swelling and treat pain. In some cases, slow-acting medicines that take weeks to become effective are prescribed in an attempt to stop the breakdown of joint tissue.
Fast-acting drugs include aspirin, which is usually the first medicine a doctor is likely to prescribe. Large doses are taken several times a day. Even such a relatively safe drug, however, has to be monitored (with blood levels and other blood tests) because it can cause upset stomach and nausea. Sometimes nonsteroidal anti-inflammatory drugs are prescribed to control swelling and pain. In recent years, a common cancer medicine called methotrexate has been shown to be effective in treating severe cases of JRA when anti-inflammatory drugs don’t work.
Living with JRA
Living with pain and stiffness is hard enough. But for a teen, it can be especially difficult. Few kids like to be considered different, and teens with JRA sometimes feel they stand out. There’s the issue of independence, which any teen prizes. It’s hard, for example, to still be needing your mom’s help getting dressed.
Deciding how (and whether) to explain their disease to other people can be tricky: A person with JRA doesn’t want sympathy or special treatment, but would like others to understand. “You want to be treated like a normal kid,” says 14-year-old Lauren Dutton of Philadelphia. “I’m no different on the inside.”
On the other hand, many teens with JRA have had long experience with their disease. They’re familiar with every detail of their symptoms and treatment routine and help plan their care. Many meet with their doctors and other health professionals on their own.
Many teens with JRA find tremendous help through support groups offered by local chapters of the Arthritis Foundation. One active group is the Rheumatology Teen Club in Philadelphia for teens with JRA, lupus, and other rheumatic diseases. They meet regularly to discuss common school, family, and social problems and share solutions.
Each member’s goals:
* To help me feel like I am not alone
* To meet others who share experiences similar to mine
* To have fun and make new friends
Who would argue with that?