JRA: Juggling Radical Ailments

I'm not sure what a "normal" childhood is supposed to be, but I'm certain I didn't have one. And so much the better! Juggling radical ailments in addition to the minefields of a typical childhood made things interesting. I not only grew up much faster than my peers but also learned to appreciate the blessings in my life very early on - two wonderful parents, a happy home, a loyal dog, and an excellent education, among others.

My journey with JRA began when I was 18 months old and will follow me forever. I had been walking just fine at that age, when one morning I woke up with knees that were swollen, red, and painful. My mom tells me that I crawled into the kitchen, mostly using my arms, sobbing in pain. My knees were more than twice their normal size and it was clear that something was very wrong. You can imagine how this would make any mother feel, of course. Here was her only child, healthy and happy just yesterday, in agonizing pain that she couldn't eradicate.

Pediatricians weren't much help. They suspected that I had been abused, or was having a bizarre allergic reaction to something (even after negative allergy tests disproved this theory). My parents were determined to get a diagnosis for me, however, and would stop at nothing. It helped that both of them were in the medical field - my dad was a cardiologist and my mom an EKG technician - and so they knew the sooner I got care, the better.

The orthopedist did x-rays, an MRI, all that fun stuff, and quickly realized that I needed to see a rheumatologist...which was much easier said than done. There is a terrible shortage of pediatric rheumatologists in the U.S., and the waiting lists to see these specialists are ridiculously long. We waited a couple months, and that was a short time. In fact I think it would be easier to get 5 minutes with the President than with a pediatric rheumy as a new patient. (From here on out, by the way, I'll refer to my doctor as a rheumy. Makes for a nice abbreviation.)

By the time I saw this rheumy, my symptoms had gotten worse. Now the joints in my fingers and toes were red and swollen as well as my knees. Looking back, I realize it was a blessing in disguise - my symptoms looked very "textbook", and my blood tests matched them. Diagnosis: Juvenile Rheumatoid Arthritis, also known as JRA. The more specific diagnosis was Polyarticular Juvenile Rheumatoid Arthritis, to give you a real mouthful. This name was just fancy doctor-speak for "more than 5 joints affected".

Today, the disease is known as Juvenile Idiopathic Arthritis, or JIA. The distinction isn't all that significant, but it does make one aspect of the disease quite clear: there is no known cause. Lots of studies have been done to look for a definite cause, but the word "idiopathic" means that a cause cannot be pinned down. Some studies emphasize a genetic component, others an environmental one, and still others some combination of both. At any rate there is no definite cause and, more importantly, no cure for the 300,000 children in the country with JRA.