Juvenile Idiopathic (Rheumatoid) Arthritis and Its Impact on Kids
This autoimmune disorder doesn't just affect elderly people. Sometimes, children are impacted, too. Luckily, treatments and outlooks have improved for kids.
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It's a commitment, but it cuts down on tough medication decisions they used to have to make with higher co-pays, Jaime says. "We still shake our heads, like, omigosh, what's next?"
But the family has spun the disease into a chance to help others, too. Back in 2011, Andy, a bright kid who loves photography, started an annual Nerf War fundraiser, held in March in Clarkston, to benefit the annual Detroit Zoo Arthritis Walk in May.
Today, psoriasis covers about half of his body. Mornings are definitely rough. "The hardest part of my day is getting up and walking down the stairs, which is pretty hard for me," Andy says. Fortunately, thanks to special accommodations with his school, the morning school bus picks him up at his home. Afternoons, when the weather is nice, he enjoys walking home the 1.5 miles with friends.
Andy's parents are hoping he'll achieve a drug-induced remission some day, a goal that has eluded him over the past 10 years. "He has not come close to that," Jaime says. "The doctors say he has a stubborn case of arthritis, and that he'll probably be on medication the rest of his life."
"Our biggest hope," Nelson adds, "is that he'll be happy, but also that he can find a job to support his medications."
Normal kids – with discomfort
Ann Patterson, 12, loves cheerleading. The Warren seventh grader is thinking softball next year – something she's also played in the past, along with basketball, swimming and soccer.
There were days when her parents, Lori and Andrew, wondered whether she'd have such a normal life.
"It only took about a week," Lori says of Ann's symptoms that appeared at 22 months. "It was a Thursday morning, and I thought maybe she had hurt herself in gymnastics. Six days later I went to get her out of her crib and she couldn't even stand up."
The family's pediatrician quickly ruled out a virus and referred Ann to Children's Hospital of Michigan in Detroit. The diagnosis? Arthritis. "We were lucky that they were so fast with the diagnosis and didn't just fluff it off," Lori says.
The Pattersons are hopeful that Ann's arthritis could go into complete remission; in her tween years, she achieved drug-induced remission three times – and there's talk about weaning her off medications again soon. Before, each time doctors took her off medication, Ann's knees became swollen and achy again.
On her meds, though, Andrew says Ann is doing very well. She gets one injection a week and, other than slight nausea, the side effects are not bad. "She lives the same life as any other 12-year-old. She doesn't miss a beat."
But like Andy and Charlie, there is physical discomfort under Ann's cheerful exterior. "Sometimes it's hard to run, and (she) can't run as fast as the other kids," Ann says.
Today's medications do a great job of calming obvious symptoms, like red puffy joints. Ironically, that may be why some adults, even teachers, don't believe these kids have real physical problems.
Nelson Moy has heard it too many times. "The problem is that it's not a visible disability. People look at Andy and think, 'Oh, he's probably just being lazy'."
Help in school, finding friends
The Arthritis Foundation of Michigan helps families get school accommodations for kids with what they call "hidden handicaps," such as pain, fatigue, limited mobility, the inability to sit on the floor or carry a heavy set of books.
Special education laws have many opportunities to give kids services, says Dorda with the foundation – which works with families to help them get what their kids need from their school districts.
"The child has a great ability to determine what they're able to take on and handle," she explains – whether that's only doing three pushups in gym class versus 10, or perhaps not sitting on a hard gym floor for hours during an assembly. Kids can approach teachers for anything from a five-minute walk to stretch out sore joints to a trip to the nurse's office for necessary medications.
"The quality of life for children has improved so much," Dorda says.
The foundation's Troy chapter has become an important resource for support and information for many families touched by JIA. "They have parent seminars we've been able to go to and we've gone to national conferences," says Jaime Moy. "They've been very helpful."
It holds a variety of fundraising events in support of its programs and research, such as the festive Jingle Bell Runs in December that draw amateur and professional runners. But among the kids, the chapter's most popular program is likely Camp Dakota, a summer camp exclusively for kids with arthritis.
Charlie Stahl loves it. "Camp Dakota is so fun. We always do a lot of activities, and it's nice to meet other kids who have the same thing you do." This year, he plans to enter the counselors-in-training program with buddy Andy Moy.
The week-long camp includes all the trimmings – crafts, boating, campfires and s'mores – but the kids are also taught about benefits of exercise and taking their medications. "I just can't say how much that camp does for these kids," says Charlie's mom Valerie. "He (now) knows other kids in the metro area who he can communicate with."
But Charlie isn't only communicating with his peers. The sandy-haired sophomore is a seasoned advocate for kids with arthritis. He's testified before the Michigan House of Representatives and shared his story with congressional staffers in Washington, D.C. He also participates in those Detroit Zoo arthritis walks every year and still does speeches on behalf of the Arthritis Foundation.
"It's something not many people know about," Charlie says. "But I'm just like every other kid. Every once in a while I have to slow down, but otherwise I keep up. I am normal and this doesn't stop me."