Kids raise funds for juvenile arthritis
April 30, 2012
PARRY SOUND – Susan Rivers was in Grade 12 when diagnosed with juvenile arthritis, but she knew the disease well after years of pain.
Now an adult, she’s on medication for the disease and hopes to reach out to any children in the community who share her experience to act as a mentor.
Rivers is dropping the first puck Saturday morning to kick off the 9th annual Score for Arthritis ball hockey tournament. The local chapter of the Arthritis Society holds the event annually to raise money to juvenile arthritis research.
“I had arthritis as a child,” said Rivers, who is 31 today. “I can remember (starting) at 10 years old being in a lot of pain, going to the hospital but, doctors around here don’t diagnose you with that kind of stuff until you complain about it for years and years. They said ‘you must have growing pains - your legs and your back, it must be growing pains’ and they’d give me (pain medication).”
Despite her aching body she played on the Parry Sound High School basketball and volleyball teams until Grade 12 when the pain was too much and she had to drop basketball, she said. She didn’t tell her peers about the days her arthritis flared up and she was in pain, or how she woke up stiff and sore, out of fear she wouldn’t be accepted on the teams, she said.
It was when she was in Grade 12 that she pushed her family to take her to a specialist and her local family doctor gave her a referral She eventually learned she had the rare form of arthritis called ankylosing spondylitis, which is the inflammation of joints in her spine.
“It was a relief, it was like acknowledgement, but it was also really scary,” she said of the diagnosis. “Ankylosing spondilitis, that was intimidating, just that word and arthritis, I though, was like an old persons disease. I didn’t know kids could get it or teenagers even, or anybody below the age of 50. “
With her experience she hopes to help others by connecting, through the local Arthritis Society, with any local children who have arthritis and need to talk.
“Who can they talk to who really understands?” she said. “That’s the thing, you have arthritis, no one understands your pain…and the age gap can be intimidating for a young person with arthritis.”
In Canada one in 1,000 children under the age of 16 has arthritis, according to the Public Health Agency of Canada.
While there are treatments, there isn’t a cure.
The Parry Sound Chapter of the Arthritis Society’s Score for Arthritis event has raised $157,000 in eight years to help fund research into the disease in hopes of finding a cure.
This year 22 local teams, from novice to midget, will play road hockey at the town dock in Parry Sound. To play, each team member raises at least $50, with prizes for those who raise more, including a netbook for more than $800.
“We’ve played in sleet and thunderstorms and every weather condition,” said event chair John Maddeford. “We’re hoping this year will be nice weather like it has been for the last three years.”
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The puck drops at 9 a.m. with closing ceremonies at 4 p.m.
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