JRA has affected me my whole life. I don’t know life without it. I guess it began in my right foot and moved up to my right knee. It has now moved to my left knee, too. I’ve never been able to run and play sports as well as other kids. When I do run, my right knee swells and I can’t bend it very well. Sometimes it feels as if my knee's going to pop open from all the pressure.
Then the disease spread to my eye. When my eye flares, my head feels like it’s going to explode. The headaches are usually right above my eyes. They get sensitive to the light and my left eye gets very blood shot. There is so much pressure put on my brain that I can’t laugh, look at bright things, or even cough.
To ease the pain, I use ice packs, make my bedroom very dark and
take extra medication. Sometimes I have to take my glasses off and
go to sleep for a few hours. I use eye drops almost every day, but only in my left eye. Sometimes I don’t have any eye problems at all, but I still have to see my eye doctor every three months. Mom says we can never miss that appointment.
I know I will have to take medication for the rest of my life. Since
I’ve been on [adalimumab] Humira, my eye problems haven’t been as bad and I am able to enjoy more play time with my friends. Life
comes at you fast, so I’ve learned to enjoy it the way it is and try to live and love life.
Seeing the World Through Uveitis: An Update
Holland, now 19, continues to take eye drops, although now weekly, not daily. She still experiences headaches, which can be at times painful and debilitating.
Excerpted and updated from the Arthritis Foundation’s Raising a Child With Arthritis: A Parent’s Guide. To order a copy, click here.