Power In Numbers
If you have juvenile arthritis (JA), you’ve come to the right web site to learn about the disease and what to do about it
Here’s what we really want you to know: You are not alone.
300,000 kids in the United States have been diagnosed with juvenile arthritis.
How does that compare with other common childhood diseases?
1 in 88 U.S. kids are diagnosed with autism
1 in 400 U.S kids are diagnosed with diabetes
1 in 250 U.S kids are diagnosed with arthritis
That’s a lot of kids.
You may have been diagnosed when you were younger, like 14-year-old blogger Zach J.,1 who has had JA since he was six. Or you may have been diagnosed more recently in your teens, like 20-year-old Erin M.2 who got her diagnosis when she was 16.
Either way, as Zach J. says, “There is power in numbers. We can be a part of the solution, a part of finding a cure, if we all work together. Together we can support each other, communicate our fears, concerns, and struggles. We can learn from each other and work together to fight this disease.”
Read about other teens with arthritis> [link to teen profiles landing page]
Your body on JA> [links to next page]
Your Body On JA
Juvenile arthritis is an autoimmune disease. This means that your immune system goes a little bit haywire and sends out white blood cells to attack the body’s own healthy cells instead of fighting off the usual bad ones, like viruses and harmful bacteria (a good example: the flu or when you germs get intoa cut). The result is inflammation in your joints and a host of other issues, depending upon which kind of JA you have. [link to What Kind of JA Do You Have? Next page]
There’s no question that JA is a pain, pun intended. In fact, joint pain is a common symptom of juvenile arthritis. Here are some others you may recognize:
•Joint redness and warmth
•Limited movement in joints
•Persistent or recurring fever
•Swollen lymph nodes
Sometimes JA symptoms seem like they could be something else. Maybe you’re tired because you stayed up too late studying for a test or you’re stiff after a sporting event. It can take a while before JA is diagnosed.
14-year-old Arianna N.3 had that experience. “Sometime in 2006 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 doctor who specializes in arthritis and joint problems in children.
Read about your brain on JA> [link to How Does JA Feel? Section]
What Kind of JA Do You Have?> [links to next page]
Which Kind of JA Do You Have?
Juvenile Idiopathic Arthritis (JIA) is an umbrella term for a whole bunch of different kinds of arthritis, including these:
•The most common form of JA
•Typically affects one to four joints during the first six months of the disease 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 young females than young males
•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 – and anemia, a low red blood cell count
•Is more common among young females than young males
Meet Sydney H. She was diagnosed with polyarticular arthritis when she was 12> 4
•Affects not only joints, but the whole body
•Can cause inflammation of internal organs, such as the heart and lungs
•May present with a high spiking fever that comes and goes and/or a pinkish rash on the chest and thighs—months before joint inflammation begins
Meet Gabrielle B. She was first diagnosed with systemic arthritis and then rediagnosed with polyarticular arthritis>5
•Causes inflammation of the entheses – the spot 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
Meet Hannah G. She has enthesitis in her ankles and knees>6
•Causes joint inflammation as well as skin conditions
•A scaly rash— behind the ears or on the eyelids, elbows, knees or scalp—may appear long before or after joint inflammation becomes a problem
•Can also cause pitting and ridging on the fingernails
•Arthritis that lasts for at least six weeks, but doesn’t match any of these descriptions perfectly
Now You See It, Now You Don’t> [links to next page]
Now You See It, Now You Don’t
Juvenile arthritis is one of a ”now you feel it, and now you don’t” kind of disease. One of the more mysterious things about JA is that in some forms symptoms, like pain, swelling and fatigue come and go. It can be quite the roller coaster. If your arthritis has ever gone into remission and then flared up again, you know what we mean.
What is remission exactly? Your doctor will have to make the final call about whether you are “in remission” or not. Here what doctors look for:
•No joints with active swelling, pain, heat
•No fever, rash, or swelling of the tissues lining the lungs, heart, abdomen, or organs
•No enlargement of the spleen or lymph nodes
•No active uveitis, or inflammation of the eye
You can be in remission whether or not you’re on meds.
•On meds, six months without symptoms = remission
•Without meds, 12 months without symptoms = remission
A flare is when your arthritis symptoms suddenly get worse. What triggers a flare? It’s not entirely clear, but these are common causes:
•Intense physical activity
Another tricky part of having JA is that it doesn’t always show. You may look just fine on the outside but feel worn out and achy on the inside. So here’s what can happen. On days it takes you a long time to get your joints moving so you can brush your teeth, get dressed and all the other things you do to get ready for school. An extra-long warm shower or bath helps, but that . That might mean you are late to school, To your friends it just looks like you get to cut early morning classes for no visible reason.
Read this for ways to talk to friends about your invisible disease> [links to Living With section]
4 Things JA Is Not> [links to next page]
4 Things JA Is Not
1. It’s not your fault
The I in JIA stands for “Idiopathic,” which means there is no known cause. While that means researchers are still figuring out what causes arthritis, it also means it’s not your fault. You didn’t get it from cracking your knuckles or eating too much fast food.
[could link to Did I inherit arthritis from my parents? In questions area]
2. It’s not catching
You can’t give arthritis to someone you date or your friends on the swim team.
3. It’s not a total life-wrecker
Yes, you might have to get more creative with how you live your life and be stronger than some of your friends. Things may not always be easy. But as Caitlin R. says, “I’d tell other kids that have [JA] to always keep your head up. Someday they’re going to find a cure. So until then, keep your life going the way you want it to and you can find a way around obstacles in your life.” You can do it. Others like Jordan S. (a football team captain) and Megan C. (a marathon runner) certainly have!
4. It’s not a death sentence
There are diseases that can be life-threatening. Arthritis is not one of them. The good news is it’s unlikely to shorten your life or make you age faster.