The majority of Canadian children with juvenile arthritis are not seeing a specialist within the suggested timeframe for early, effective care, according to a report prepared for The Arthritis Society. The report, authored by The Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI), found that children with this chronic disease will see at least three health practitioners and wait four to five months after their symptoms begin before being correctly diagnosed and receiving optimal care from a multidisciplinary childhood arthritis centre.
The report suggests that for children with arthritis, longer delays before being diagnosed by a pediatric rheumatologist result in greater disability and poorer quality of life early in the disease course. Current research is examining the longer term impact of delays in receiving contemporary pediatric rheumatology specialty care.
“We know from past research and experience in caring for children with arthritis and their families that the impact of this condition is often life-changing and far-reaching,” says Dr. Lori Tucker, Clinical Associate Professor in Pediatrics, Pediatric Rheumatology, BC Children’s Hospital and University of British Columbia. “The fact that there are significant delays before children with arthritis are seen by a pediatric rheumatology specialist may be related to the overall lack of awareness and knowledge of this condition.”
March is Juvenile Arthritis Month, and The Arthritis Society is reaching out to educate Canadians about the realities of living with juvenile arthritis (JA). Arthritis is considered by many to be a disease that only affects the elderly – however, JA is one of the most common chronic diseases among children in Canada, affecting one in 1,000 children under the age of 16.
“Considering that children’s arthritis is a major children’s health issue, we are using Juvenile Arthritis Awareness Month to urge Canadians to take notice,” says Steven McNair, President and CEO of The Arthritis Society. “The debilitating pain experienced by thousands of Canadian children with arthritis should not be ignored and it’s our duty to shed light on the urgency of early diagnosis and treatment.”
Juvenile arthritis is defined as continuous inflammation of one or more joints lasting at least six weeks for which no other cause can be found in a child age 16 or younger. Symptoms of JA include joint pain, morning stiffness, joint swelling and problems with mobility. These symptoms interfere with regular activities, such as being physically active, playing with friends and going to school.
While there is still no cure for juvenile arthritis, there are medications that can reduce the inflammation and relieve the pain and swelling. Involvement of trained physiotherapists and occupational therapists, and support from the pediatric rheumatology team, help children with arthritis participate in normal activities.
With proper treatment, most children will enter adulthood without major physical disability. Contemporary treatment for juvenile arthritis ranges from oral medications to injectable medications, and requires regular medical follow-up, physiotherapy and laboratory testing. Children do not grow out of their arthritis; approximately 60 per cent of children will continue to have arthritis or live with its after-effects into adulthood.
Research funded by The Arthritis Society has helped children with juvenile arthritis lead more active, fulfilling lives and highlights the impact of donor dollars. Further investments in research will broaden our understanding of the disease, improve treatments and, ultimately, find a cure.
Juvenile Arthritis Awareness Month Activities
Social Media Events
As part of its Juvenile Arthritis Awareness Month activities, The Society will be conducting social media events via Facebook every week during March. The events, which will involve the participation of leading pediatric rheumatologists and individuals with JA and their parents, will encourage online conversations about juvenile arthritis. For details about event dates and times, please visit www.childrensarthritis.ca.
“KNOW JA Video Contest”
The Arthritis Society will be holding a youth video contest during March. The objective of the contest is to put a “face” on juvenile arthritis by engaging youth with arthritis to share their stories. For details and contest rules, please visit www.childrensarthritis.ca.
About The Arthritis Society
The Arthritis Society is Canada’s principal arthritis health charity empowering the nearly 4.5 million Canadians with arthritis to live their lives to the fullest by combating the daily limitations of arthritis. In the last 60 years, The Society has invested more than $175 million in arthritis research to develop better treatments and, ultimately, find a cure.
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For more information or to schedule an interview, please contact:
National Marketing and Communications Manager
The Arthritis Society
416.979.7228, ext. 3348
National Marketing and Communications Coordinator
The Arthritis Society
416.979.7228, ext. 3354