September is Arthritis Awareness Month in Canada, shining a spotlight on a disease that can affect far more than joints — and far more than older adults. For Calgary’s Riley Ostrowski, the diagnosis came when he was just seven years old, after a frightening and confusing stretch of hospital visits, painful symptoms and months without answers. He woke early one morning crying and unable to move his neck, prompting his family to take him to hospital. “I feel like it just stopped all of my physical movement,” said Riley. “I felt it in my ankles, my shoulders and my wrist and I wasn’t even able to walk up or down the stairs.” What followed was a 12-day stay at Alberta Children’s Hospital, along with months of appointments, testing and uncertainty before Riley was eventually diagnosed with systemic juvenile idiopathic arthritis, or systemic JIA. Riley’s mother, Jennifer Schultz, says that at its worst, the disease affected as many as 14 of her son’s joints. “He experienced high fevers, rashes, fatigue, and pain and until this happened, we had no clue kids could get arthritis,” she said. “It took about four months to get the diagnosis, but the fact that we were able to get treated right away was a Godsend because some families have spent more than a year or two years before they got an answer.” Riley was initially treated with anti-inflammatory medication and steroids before moving to biologic therapy. His family says the medication made a dramatic difference. “The treatments have been amazing and work very fast,” Schultz said. Riley initially received treatment intravenously at Alberta Children’s Hospital every few weeks, but has since transitioned to injections at home. His condition is now largely in remission, and he has returned to many of the activities he enjoys, including playing baseball. “I sometimes feel like a normal kid. I was freaked out when I first started having to inject these needles, but I feel a lot stronger,” Riley said. “I love playing baseball, writing comics, and playing video games. So if there are any other kids out there with juvenile arthritis, it’s the love of your family that makes you strong.” What is juvenile idiopathic arthritis? Dr. Marinka Twilt, a pediatric rheumatologist at Alberta Children’s Hospital and professor of pediatrics at the University of Calgary, says juvenile idiopathic arthritis is an autoimmune disease in which the immune system mistakenly attacks the body’s own tissues. The exact cause is not known and is likely influenced by a combination of genetic and environmental factors. “It’s nothing that a patient or parent has done wrong, and nothing that they could have prevented from it to happen,” Twilt said. Juvenile arthritis affects an estimated one in 1,000 children. Twilt says symptoms in children can sometimes be difficult to recognize because younger patients may adapt to pain rather than complain about it. “They’ll just find another way to still do what they want to do,” she said. Some children may stop using an affected joint, become unusually tired or lose the ability or willingness to do activities they previously enjoyed. Younger children may suddenly want to be carried more often or stop running and playing. “If you see that there’s regression in what they could do before, that would be really a sign to go and see a health-care provider,” Twilt said. Twilt says treatment options for juvenile arthritis have improved significantly, but awareness remains important because earlier diagnosis can help children access effective treatment sooner. “Awareness is good for the patient that they’re earlier diagnosed, but then when they’re diagnosed, we have to have access to treatment,” she said. Building support for families Cassie + Friends, a Canadian charity supporting children with juvenile arthritis and other rheumatic diseases, says roughly 25,000 children across the country are living with those conditions. “We really want people to understand that kids get arthritis too,” said David Porte, chair and one of the organization’s founders. Porte helped establish Cassie + Friends after his own daughter, Cassie, was diagnosed with juvenile arthritis at 20 months old. The organization now provides families with education, financial and emotional support while also connecting children with others facing similar diagnoses. Cassie + Friends is holding a Calgary run and walk at Fish Creek Park on Oct. 3, bringing families, doctors and supporters together to raise awareness and funds. “The medication is great; that’s what treats a disease. But it’s really building this community around it is what lets the families really thrive together,” Porte said. “We really want people to understand that kids get arthritis too. We really want people to understand what those symptoms are, what they should be looking for if their child has sore joints in the morning, if they’re complaining about pain, that not to overlook it.” Porte adds that the community events his team runs across Canada are also a chance to build awareness. One of the challenges is access to treatment. “The access is not consistent across the country. The access is not consistent for all kids and families, so that is one of the other things that we’re really working on.” Growing economic burden in Alberta Arthritis Society Canada is also using Arthritis Awareness Month to highlight the broader impact of the disease. According to the organization, arthritis carries an estimated $5.1-billion annual economic cost in Alberta through expenses such as medication and hospital care, as well as lost productivity. Trish Barbato, president and CEO of Arthritis Society Canada, said the report shows another $10 billion is also attributed to social value loss. “The social impact cost is a new number. It is related to what do people lose because they’re in pain all the time, because they don’t have mobility.” The cost of pain, reduced mobility, lost independence and the activities people can no longer take part in means arthritis is now the leading cause of disability across Canada. Barbato adds that the Alberta figures also show the consequences for both individuals and the health-care system. “It’s a failing of the system. It’s not a failing of individuals who choose to find another path,” Barbato said when discussing the challenges faced by people trying to access arthritis care. She says improving access to community-based therapy and education could also help people manage the disease and, in some cases, reduce pressure on the health-care system. “And so when you think about someone who says, ‘I have a bad knee,’ I always joke, ‘You do not have a bad knee. You have end stage arthritis.’” “If you’re not mobile, if you can’t walk, that is going to impact your job and your ability to be productive.” The report projects the overall economic and social burden of arthritis in Canada will rise from $142.4 billion annually today to $222.3 billion by 2055, as the number of people living with the disease is expected to grow from more than six million to at least 10 million. Primary Care Alberta says arthritis can significantly affect a person’s health, independence and quality of life, and that provincial guidance is available to help health-care providers assess and manage the condition. It says Albertans can also access supports including arthritis education, physiotherapy, self-management workshops and exercise programs.
