Learn about diseases that affect neighbors
My 16-year-old daughter was diagnosed with juvenile rheumatoid arthritis in January 2012. The two months prior to that day were the worst of her life and mine. Severe joint pain, lack of full mobility in her arms, knots forming on knees and feet and many sleepless nights are some of the things she had to deal with.
Because of her age and the way her symptoms were manifesting, diagnosis and therefore treatment were put off. She is now responding to the treatment, but still has flare-ups, most of which occur in her shoulders. She’s unable to raise her arms above her chest so I wash and dry her hair for her on these days. It’s difficult for her to carry textbooks at school when these flare-ups happen. Her friends have been supportive, but she keeps so much from them.
I live for the days when she wakes up pain-free and can do things without assistance.
She’s a normal kid. That’s whom faculty and friends see at school: the girl they know is sick but doesn’t look it.
When she misses school because the pain is too great, she lies. She tells friends she has a virus or a cold. She doesn’t think they’ll understand. And they probably wouldn’t.
It’s hard for people to fathom that she can be just like any other kid one day and hardly able to move the next. But that’s how this disease works.
I want to raise awareness in my community and the schools so that my daughter doesn’t have to hide her pain any longer. If you know of some child who has a disease in your school, whether it’s JRA or something else (I’m talking to adults and kids), take time to learn about it.