Out of Joint: Living with Juvenile Arthritis

While arthritis is common in older people, approximately 24,000 children and teens are living and coping with juvenile arthritis in Canada. The joint disease not only has physical effects but also comes with painful psychological consequences.

WHEN JARED HAUCK was just 11 years old, he loved playing with Lego. But when his fingers started to hurt so badly that he no longer enjoyed building creations out of the tiny blocks, doctors initially thought he had low bone density. However, tests soon proved that the Cochrane, Alberta-based boy actually suffered from juvenile idiopathic arthritis (JIA).

Commonly perceived as a disease that only affects the elderly, parents and families are “very surprised,” when their kid is diagnosed with arthritis, says Gillian Taylor, who worked as a pediatric rheumatology nurse at the Montreal Children’s Hospital for over 20 years.

Huack, now 18, is one of approximately 24,000 Canadian children and teens living with JIA, according to The Arthritis Society. JIA, also sometimes called juvenile rheumatoid arthritis, is a common chronic disability in kids and teens.

“It’s the disease with the longest delay in diagnosis for just about any chronic illness,” Taylor says. She explains that it can be difficult for parents to notice symptoms of juvenile arthritis because it comes on slowly. “Sometimes the swelling (of the joints) isn’t so noticeable,” she adds. If kids are at the age where they’re bathing themselves, such as teens, parents may not be able to see the inflammation for quite some time.

SIGNS AND SYMPTOMS

According to the Arthritis Foundation, signs and symptoms of JIA include pain in the joints of the knee, hands, feet, neck, and jaw right after waking up, limping because of stiffness or redness, swelling or heat around the joint.

Since symptoms can vary day by day, Taylor says that it can be difficult for parents to know if their child is feeling healthy or is in pain.

Research shows that all teens with arthritis risk feeling isolated from their peers at times, especially when their pain is interfering with their school and social life, says Taylor.

“Social repercussions, like being able to play soccer one summer but having difficulty going on a short bike ride the next summer can be especially hard,” she says.

If your teen has arthritis, it’s especially important to notice if they’re withdrawing from activities, struggling in school more than usual, or spending more time alone at home than usual, as these may be signs that your teenager is suffering psychologically.

There isn’t anything
I can’t do because of my arthritis.”

SUPPORT

Parental support is extremely important for children with chronic illnesses, says Taylor.

“In some ways, it may be a positive, healthy step to request assistance from a social worker or psychologist through the specialty clinic (rheumatology) for both the parent and the child,” she says. “This is a great way parents can show their kids the importance of reaching out for help when needed.”

TREATMENT

Since there is no cure for arthritis, medication and treatment work to keep the disease in remission—which can be a very difficult component of having a child with arthritis. Exercise is an essential part of pain management for juvenile arthritis, and activities that don’t put stress on the joints, like swimming, is ideal.

Almost seven years after being diagnosed with polyarticular arthritis, a form of JIA that primarily mainly affects the fingers and toes, Hauck says he takes at least seven pills a day to manage his pain. Hauck also sees a physiotherapist for the discomfort in his back and hands and makes sure that he leads an active lifestyle—some of his favourite activities include long boarding and playing volleyball. “There isn’t anything I can’t do because of my arthritis,” he says.