Linda Sawchuk was worried when her one-year-old daughter noticeably limped as she learned to toddle – she was terrified when little Laura was suddenly unable to walk or crawl.
Linda and her husband, Jamie, had already taken Laura to their pediatrician to discuss her limp and had tests done, including a bone scan.
"(That part) was really scary, because they were checking to make sure she didn't have any tumours. That thought was horrible," Linda says. "And when that came out all clear, they referred us to a rheumatologist."
They were put on a four-month long waiting list.
"She was a really happy baby and (suddenly) she just wouldn't walk. She had a little chair and she just stopped. She just wasn't really moving," Linda says.
An emergency trip to the rheumatologist and a blood test confirmed Laura's diagnosis – juvenile arthritis. Now 16, she has extended oligoarticular onset idiopathic juvenile arthritis – "a mouthful" to say and even more for the family to cope with.
"It was really scary. I hadn't really heard of babies getting arthritis," Linda says. "Just the thought of giving her medication made me sick – to give your baby medication three times a day – and for how long? She was actually on medication for years and years."
During March, juvenile arthritis awareness month, the Sawchuks and others are speaking out to help bring the disease into the light. An estimated one in 1,000 Canadian children below age 16 lives with juvenile arthritis, making it one of the most common chronic disorders of childhood.
It can strike infants, toddlers, children and adolescents. It can be mild, or progressive and disabling. Arthritis may be limited to the joints, or affect the eyes and other organs. In some cases, juvenile arthritis resolves by adulthood; in others, its effects are ongoing, requiring lifelong medical care.
Laura began treatment right away, receiving a cortisone shot in her knee and daily anti-inflammatory medication to decrease the swelling in her joints. She also began regular occupational and physical therapy and wore a brace on her leg.
"At the time … her leg was stuck in the bent position," Linda recalls.
The family learned to cope with Laura's condition, Linda says, quickly adapting to regular stretching and medication routines. "And then you worry, what's going to happen? Is she going to be normal? Is she going to be able to walk? Sometimes you see all these little kids in the clinic in wheelchairs and you think 'oh my gosh, what is it going to be?'"
Luckily, Laura responded to medication and therapy. Over the years, she had three cortisone injections in her right knee and in 2008 had surgery to "clean up" the joint.
Inflammation from arthritis can make bones grow faster because of the increased blood flow. Her affected leg grew longer so she had to wear a lift in her left shoe from the age of five to 13. She still has a slight discrepancy in the length of her legs, but "it's not lift-worthy," says Laura.
The arthritis also affected her eyes. She was twice diagnosed with uveitis – inflammation in the eye – at age 3 and 7. Doctors remedied the condition with cortisone eye drops, but she continues to get screened every six months.
Although the arthritis has been an ongoing concern, Laura's overall health has been good and she has been in remission from juvenile arthritis for two years.
"I'm hoping it doesn't come back," she says. "I hope it's gone for good so I can just be normal without it for the rest of my life."
In addition to other activities, Laura started figure skating at age four.
"We were always really aware that we wanted to keep her as active as possible," her mom says. "She already played soccer and took dance lessons. With the figure skating, I worried about her falling on her knee."
But Laura didn't fall. In fact she took to the ice like a fish to water.
"We went from her early childhood where Laura wasn't walking, to when she was seven and she was the CanSkater of the year," Jamie says proudly.
"Physiotherapists have always marvelled at how strong her leg is. And they think it's because of her skating," Linda adds.
"I've tried to be super-active and I've never said, 'I probably can't do that' because of my arthritis," says Laura. "It hasn't really held me back from a lot. In some aspects of sport, like in skating, it's held me back from certain things, but in general, it hasn't held me back that much."
Early diagnosis is key, says Linda.
"I think that a lot of people don't realize that kids can get arthritis and it's really important to get them checked, if they're having symptoms like limping, swelling, stuff like that. The earlier the treatment, the better the outcome.
"She's a pretty good example - it was a long haul. But she's perfectly normal and doesn't have any limitations now. We're very, very lucky," Linda says.
"The fact that they found it early and she was able to lead an active life as a child and a teenager I think, sets her up well for actively participating in her future and making it what she wants to be," Jamie says. "Whether it's as a skater, coach, physiotherapist – no doors are shut, which, as a parent, that's what you want."
Adds Laura: "I hope that I can help spread awareness to other people and help them realize that it may limit you physically, but it doesn't have to limit you internally … (it) doesn't have to limit your dreams."
Juvenile arthritis awareness month
The Arthritis Society in Victoria is holding a youth video contest in March. The objective is to put a “face” on the condition by engaging youth with arthritis to share their stories. For details and contest rules, please visit www.childrensarthritis.ca.
Being personally aware
If your child has any of the following symptoms over a few weeks, contact your family doctor:
• Inflamed Joints (red, swollen, and warm to the touch)
• Stiffness in the morning or after waking from naps
• Limping or difficulty using an arm or leg