My Story

I suppose I need to explain a few things about my relationship with juvenile rheumatoid arthritis (going forward JRA or simply RA). I've been unfortunate enough to have this serious chronic illness. I was first diagnosed with it when I was 7 years old and from that point on my life has never been the same. I was born and grew up in Belarus, Eastern Europe. Actually it's a miracle that I was given an accurate diagnosis, considering that there wasn't much data and knowledge about that condition in the Soviet Union back in the late 80s and early 90s.

It all started in the Fall, around October. I noticed that my left joint was getting stiff and tender. I first thought that maybe I pulled one of the ligaments around my joint. I showed the knee to my parents and they thought the same. I spent a lot of time playing outdoors with my friends, something that I'm sure all 7 year old boys enjoy doing the most. So the obvious conclusion was that I hurt myself when jumping off the fence or running. But the knee discomfort didn't get any better. The joint became more and more inflamed and swollen, and it became harder for me to walk. Shortly after that, my right knee began to swell up as well and later the same happened to my ankles. That started my endless hospital visits.

First my parents took me to the local hospital, but the doctors there could not come up with a clear explanation for my problems and referred us to the regional hospital. The medical system in Belarus, and I suppose some other Eastern European countries, is mostly inpatient. Many people with acute or hard to treat conditions stay in the hospitals for days or even weeks at a time. Since the medical systems is socialized, the taxpayer picks up the tab. The "beauty" of socialism. I've spent about a month and a half at the regional hospital. Needless to say I wasn't too excited about being away from my family and friends for so long. The hospital was about an hour drive from my home town which precluded my family from coming to see me as often as they (and I) wanted to.

The majority of that time no one could answer a simple question about what was wrong with me. The initial blood work didn't show anything alarming (or maybe the doctors didn't test me for JRA right away). My physician recommended putting casts on both of my legs and so for about 2 or 3 weeks I had to move around on crutches. My condition wasn't improving, and finally my doctor recommended seeing a rheumatologist. Once another series of blood tests were completed, they revealed that I tested positive for RA, and from that point on I was diagnosed with juvenile rheumatoid arthritis. I was transferred to another hospital in Minsk which had a unit that specialized in treatment of arthritis patients. The treating doctor told my parents that the only treatment that they could offer was draining my joints of synovial fluid. My parents refused to give their consent to perform that procedure and asked to release me from the hospital. The doctors objected and said that I would never walk again, but went ahead granted the release. My dad took me home in his car; he had to carry me because at that point I couldn't go up and down the stairs on my own. And so began the next chapter in my fight with JRA.