It is estimates that In fact, one child in every 250 children in the USA have this disease. In Australia it is estimated that around 7,000 kids have the disease. It is tough on kids but it is also tough on parents.
- It can be very lonely;
- The shock of the diagnosis can take a long time to come to terms with;
- People don’t appreciate the difficulties involved;
- Demoralizing, intimidating, harrowing;
- So important to link upon with other families; and
- Kids with JIA needs other kids with JIA too;
Remember, you are not alone.
But sometimes kids with JIA have really bad days. Like Can’t-get-out-of-bed-really-painful days or Why-is-this-happening-to-me? days. There are concerns about swollen knees, fevers, and fingers that hurt too much to hold a pencil.
This is what kid themselves say:
“Things aren't perfect. I still have days where I feel really lousy, and I have some pain regularly, but it's a lot better. Right now, I'm trying my best to forget the pain. I'm just like a normal kid, only with arthritis.” aged 12
“I can't play basketball anymore because I can't run or I'm in pain. I feel like I'm losing my friends because I'm never at school. It's hard … I miss lots of days of school because I can't sit on my bottom or my back hurts.” aged 13
Sometimes I have to catch up school work because I am either at the doctor’s or I am at home in bed with swelled up knees or feet. aged 9
A Typical Story
At 19 months old that he began to walk with a limp. A month later, he was only walking on the very outside edge of his right foot and his right ankle was swollen. Before long, he stopped walking all together.
After numerous medical visits and x-rays, it took a very long and painful nine months to get his juvenile arthritis under control. He had his ankles and knees injected with steroids three different times. He was three years old before the swelling in his ankle was under control.
He now takes a biologic infusion once a month and and acts like a typical 6 year old.