1. It’s all about connections
“The leg bone connected to the knee bone, and the knee bone connected to the thigh bone … .” Remember that old song? Well, juvenile arthritis (JA) is a disease that affects those places where bones connect: the joints.
You have hundreds of joints in your body where different bones attach to each other. The joints most often affected by arthritis are knees, ankles and wrists. Arthritis can make your joints swell and hurt, and it also can affect other parts of your body.
One boy we know with arthritis, Sam L., had so much pain that he had to learn to walk three different times! But after trying different treatments, he’s now a happy kid who has played tee-ball and learned karate. There’s no cure for JA, but there are solutions that can help you live a happy, healthy life like Sam does. Make Your Own JA Action Plan
2. Kids have a special kind of arthritis
The kind of arthritis you have is called “juvenile,” which means “young.” That’s because your joint disease is only diagnosed in children 18 years old and younger. (People who are older have a different kind of arthritis.)
Some kids get arthritis when they’re still toddlers, like Bevin T., or in kindergarten, like Scout F. Others don’t know they have arthritis until they’re a little older. Justin S. was diagnosed when he was 9. His face swelled up and he had knee and back pains and got rashes and fevers. “But I never let that stop me,” he says. “I just tried to figure out what I could and couldn’t do.”
Read 10 Ways JA Kids Are Special [link to this page]
3. You’re not alone
Nearly 300,000 kids in the United States have been diagnosed with JA. In fact, one in every 250 U.S. kids has this disease. That’s a lot of kids; more than the number who have diabetes but less than the number with ADHD . The good news is that you’re not alone. There are other kids to talk to about your JA. In fact, you can meet some other kids with JA right here.
“Just remember you're not alone in this fight against arthritis! Hold your head up high!” says Anna, who is 12. “There are many of us out there, sharing the same feelings. You are very strong and amazing!”
Meet Other kids With JA
Where Does It Hurt?> [links to next page]
Where Does It Hurt?
Having JA is like having your own army turn against you! Instead of fighting off the bad guys (like the flu or germs trying to get in when you scrape your knee), your white blood cells start attacking your body’s own healthy cells thinking that they’re the enemy. That causes symptoms, which is your body’s way of telling you something is wrong. Symptoms are how a doctor can tell if you have JA. Here are some of the symptoms of the different types of JA.
- Joint swelling (also called inflammation)
- Joint stiffness
- Joint tenderness
- Joint redness and warmth
- Limited movement in joints
- Fever that won’t go away or that keeps coming back
- Feeling really tired (also called fatigue)
- Vision problems, like red or sore eyes
- Slow growth
- Swollen lymph nodes
Sometimes JA symptoms seem like they could be something else. Maybe you’re tired because you stayed up too late on a holiday or you’re stiff after playing outside. It can take a while before your doctor figures out you have JA.
Arianna N. had that experience. “I started to have trouble with my right wrist, lots of pain and swelling, and, at first, we thought I was sleeping on it funny because it was stiff in the mornings. Then a couple of months later it started in the left wrist. Not long after that it was in my ankle.” It took a year before Arianna was diagnosed with JA by a pediatric rheumatologist (a joint doctor who works with children).
Once doctors know what your symptoms are saying, they can help you get the treatment that will help you feel better. [link Your JA Action Plan page]
Learn More About the Types of JA> [link to next page]
Which Kind of JA Do You Have?
Another name for juvenile arthritis is juvenile idiopathic arthritis. Doctors and patients often use initials – JA or JIA – to talk about the diseases because it’s a lot easier! There are a lot of different types of arthritis. Here is a description of some of them. As you get older, it’s smart to learn the name of your disease and to be able to describe it in a few words.
Learn How to Become Your Own JA Advocate> [link to advocate page]
- The most common form of JA
- Affects one to four joints during the first six months and more joints later on
- Often starts on just one side of the body, usually in a large joint, like the knee or ankle
- Sometimes causes eye inflammation, called uveitis
- Is more common among girls than boys
- Affects five or more joints during the first six months of the disease, often in the same joints on both sides of the body, such as both wrists or both knees
- Can cause problems in large joints that bear body weight, like hips and knees, as well as small joints, like those in the hands and feet
- Can affect the neck and jaw
- May have other symptoms including a low fever, bumps under the skin – called rheumatoid nodules (bumps) – and anemia, a low red blood cell count
- Is more common among girls than boys
- Affects not only joints, but the whole body
- Can cause swelling of internal organs, such as the heart and lungs
- You may experience a high sudden fever that comes and goes and/or a pinkish rash on the chest and thighs – months before joint swelling and pain begins
- Affects boys and girls equally
- Causes swelling and pain of the entheses – that’s where muscles and tendons attach to bones
- Causes pain and swelling in specific joints and other areas of the body, including the heels, toes, fingers, elbows, pelvis and chest
- Is more common among boys than girls
- Causes joint swelling and pain as well as skin conditions
- A flaky, red rash – behind the ears or on the eyelids, elbows, knees or scalp – may appear before or after joint problems show up
- Can also cause bumps and rough spots on your fingernails
- Arthritis that lasts for at least six weeks, but doesn’t match any of these descriptions perfectly
3 Things JA Is Not> [links to next page]
3 Things JA Is Not
1. Juvenile arthritis is not your fault
The doctors who look into why diseases happen are still figuring out what causes arthritis (we wish they’d hurry up!), but here’s one thing they do know for sure: If you have arthritis it is not your fault. You didn’t get it from something you did or didn’t do. There is no real known cause.
Dealing with Why Me?> [link to page]
2. Juvenile arthritis is not catching
You can’t give arthritis to your friend at school or to the neighbor you ride bikes with. Arthritis isn’t contagious (it doesn’t spread) like the flu.
How to Talk with Friends About JA> [link to Be Your Own Advocate page]
3. Juvenile arthritis is not on anyone’s wish list, but …
It’s true that nobody wants to have arthritis. But it’s also true that some diseases are life threatening (cancer, for example), and arthritis is not one of them. Arthritis also is not likely to shorten your life or make you age faster.
JA is sometimes tough to handle. It might stop you from doing everything you want to do. But every type can be treated. Many kids who have JA dance, play sports and play musical instruments. They try new activities and reach new goals. With treatment, you will, too!
What Does THAT Mean?> [links to next page]