The first time I came home with a shoulder I couldnâ€™t move, my mother thought I was trying to get out of a math test. It made sense. I hadnâ€™t played sports in over six months and my pre-teen rebellion had more to do with staying up all hours than trying injury-inducing activities. Few pediatricians talk about the possibility of arthritis with parents, and even fewer parents know to ask.
Juvenile Arthritis is an often chronic disease of the immune system that affects 300,000 kids (ranging from a few months old to eighteen) in the United States. My particular brand of arthritis is called Polyarticular Rheumatoid Arthritis. It means I have more than five infected joints, including the larger joints, such as knees and ankles, that often become inflamed and swollen. In my case, I have RA in every joint in my body and have lived with the disease for seven years.
The way it was explained to me (at age thirteen), the white blood cells sometimes didnâ€™t recognize my joint tissue and attacked it instead of protecting it. Years later, I learned that the synovium (the lining of the joint) does not develop correctly, often overgrowing.
The problem with these explanations is that they both still rely heavily on theory. Not knowing the cause leads to ambiguous testing, shaky diagnoses, and little hope for a cure. There may be a genetic disposition in children with arthritis, but there is no proof of it. Nevertheless, children are tested for arthritis using a â€śRheumatoid Factorâ€ť test that focuses on a specific antibody that is sometimes found in large quantities in arthritic people. Usually, kids havenâ€™t had the disease long enough for a lot of antibody to be prevalent. And just because a child tests positive doesnâ€™t mean that they have arthritis, it just means they have that â€śgenetic dispositionâ€ť that the medical profession clings to as an explanation.
I didnâ€™t have the genetic disposition. I had arthritis two years before my 80-something-year-old grandmother got it. I spent four months in and out of hospitals and doctorsâ€™ offices being examined and re-examined, wondering, as any dramatic thirteen-year-old would, if I was going to make it through the winter.
The chances didnâ€™t look good. I had sweltering fevers and often couldnâ€™t keep down food. Or I had chills raking my body to the point I couldnâ€™t take x-rays because I couldnâ€™t keep still. At random moments, I would feel the excruciating pain of inflammation through the painkillers regularly being pumped into my bloodstream by I.V. I touched a hot iron once out of sheer curiosity as a small child; an inflamed joint feels like having at least five of those irons inside your joint and you canâ€™t get them out.