Witnessing your 11-year-old daughter screaming in pain every morning is something any mother would dread. Yet, that has been Charlene Prime’s morning routine since her daughter, Jaylene, was prescribed daily injections of anakinra to treat a rare form of arthritis known as systemic juvenile idiopathic arthritis (sJIA). Jaylene was already managing a weekly regimen of 85 pills, but the injections were what caused her the most distress. She described them as “fire burning under her skin.”
The effects of Jaylene’s disease have been hard on the whole family, including Jaylene’s two siblings, but it has been particularly devastating for Jaylene. Arthritis has robbed her of a normal childhood since she was diagnosed in 2015. When Jaylene first started showing symptoms, her father had to carry her up and down the stairs because she was unable to navigate them on her own. She suffers regularly from severe pain, fevers, and hive-like rashes all over her body. The side effects of steroids have altered her appearance significantly. At Christmas, her condition was so bad that Jaylene told her mother she couldn’t lift her head off the pillow and thought she was going to die.
In addition to the terrible physical suffering, isolation caused by a disease like sJIA makes it difficult for children to make friends, participate in regular activities, or develop self-esteem and confidence. One experience that has been “lifesaving” has been a special camp for children with arthritis offered by the BC and Yukon Division of the Arthritis Society. Providing an opportunity for Jaylene to enjoy summer camp without the pressures of trying to fit in has been transformative. Programs like this, supported by the Arthritis Society, can truly make a difference in the life of a child with sJIA. Even one week in a supportive environment can change a child’s perspective, acceptance of the disease, and feelings of self-worth. For Charlene and Jaylene, every step forward brings a measure of comfort and relief in this incredibly difficult journey.