KATE Schwartz, 20, spends her days scurrying between classes at the University of British Columbia, teaching piano lessons to players of all ages, daily workouts and social engagements.
This busy West Vancouver resident has recently decided to add one more role to her incredibly active life: advocate, following her diagnosis with juvenile idiopathic arthritis at age four.
"There's a big misconception that kids diagnosed (with arthritis) are supposed to sit there and lie down and read books or do nothing, but I was put in more activities because of (the importance of) keeping the joints limber. I became really, really busy. And honestly, it's just my reality. It affected me, but it's all I've ever known."
Juvenile arthritis affects approximately one in 1,000 Canadians under the age of 16, and is a leading chronic disease among children, according to The Arthritis Society. The immune systems of those who are affected fail to recognize healthy body tissue and attack it. Symptoms include pain and inflammation in the joints and the severity of the condition ranges. A diagnosis can also take a social and emotional toll due to some children's inability to participate in regular activities, like sports, or their inability to perform basic tasks, like buttoning clothing.
Schwartz' experience with the disease has been roller coaster-like, seeing her go through a series of highs and lows. While now she is considered to be in remission, she remains cautiously optimistic, as she was believed to be in this state previously for a five-year period, though experienced an intense relapse at age 18. "In the space of one week, I was told, 'Your arthritis is back. We're going to inject your knee tomorrow. You're back on all these meds. Oh, and by the way, you have to quit dance,' which I had been doing five times a week for years."
Schwartz has resumed her previously active life and remains committed to not letting arthritis negatively impact her. She has also dedicated herself to helping others impacted by the disease.
As a child, she was a camper and for the last five years she's been a counsellor at The Arthritis Society's annual summer camp held at North Vancouver's Camp Capilano.
"It's really a place where you forget about the disease. . . ." she says. "It's a really supportive environment."
Schwartz is beginning to speak at public events and is serving as a media spokeswoman for the society. Her goals are to fight the misconception that it's a disease affecting only the elderly and to share her story in hopes of inspiring others. "It's a challenge, but it teaches you perseverance," she says. "It builds character. I would not have the same goals that I have now if I didn't get arthritis. I wouldn't have the same moral standings I have now if I didn't have it. My big thing is I want people to know there is a really big positive side to it. I mean the world would obviously be a much better place without it, but personally, I choose to be positive about it and that's genuine."
Timed with March, which is national Childhood Arthritis Awareness Month, The Arthritis Society announced March 7 that $5 million was raised to establish the Ross Petty Arthritis Society Research Chair in Pe-diatric Rheumatology, in collaboration with the Department of Pediatrics at UBC. The chair, which hasn't been named yet, will act as a bridge between lab research and treatment. Discoveries will be used more quickly to improve the care of children living with juvenile arthritis. In addition, the funding will help ensure that future pediatric rheumatologists get the training they need.
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