Wade Balmer was nearing his teenage years when the contractures in several joints began to worsen. Unfortunately for Wade and his parents, his frustration increased as his condition deteriorated.
Since age 5, Wade had been coping with muscle weakness, red inflamed skin and other symptoms of juvenile dermatomyositis, an inflammatory disease primarily affecting the skin and muscle and sometimes joints.
By age 13, Wade had developed a new symptom — calcium deposits that accumulated in his joints or appeared as nodules just under the skin’s surface, causing pain when they were bumped or irritated.
Wade became fed up with everything: the doctor’s appointments, the constant sunscreen and the nagging, flu-like, energy-sapping malaise.
“I decided that the way I would take control is by refusing to do my exercises,” says Wade, now age 29. “I would get into a fight with my parents every single night.”
For nearly a year, he refused to do exercises at all, or only the barest minimum under duress. His parents tried pleading. They tried rewards. They tried reason, detailing the joint risks involved. And they were right, he says. “It’s one of the largest regrets I have in my life.”
It wasn’t that those early teen years were uniformly miserable. Wade benefited from the companionship of a core group of friends. He flirted with girls. And his sense of humor helped him brush off, to some degree, teasing about his especially skinny physique that stemmed from a rare complication of his disease.
For years, Wade had secretly nurtured the hope that he’d reach a magical age — typically it was 18 or 20 — and his disease would slide into remission. “As I started getting into my teens, that dream started crumbling.”
His freshman year in high school proved to be the turning point. A calcium deposit had punctured his skin, leading to a dangerous staph infection. Wade spent two weeks in the hospital. His classmates rallied around, expressing their concern. Wade started talking more openly about his disease and its impact.
Nevertheless, the evidence of his adolescent rebellion remains engraved in his joints more than 15 years later. The contractures are most noticeable in his elbows. During that time, when he blew off his exercises, a crucial window closed, he says. “It’s really hard to recover that flexibility if you don’t intervene right away.”
Today, Wade has found ways to work around his joint contractures, and he’s not taking chances blowing off his exercise. An avid runner and walker, he has completed five half-marathons and one full marathon.
Excerpted from the Arthritis Foundation’s Raising a Child With Arthritis: A Parent’s Guide. To order a copy, click here.