Colin Johnson has not had an easy time of it.
The 14-year-old was diagnosed with juvenile idiopathic arthritis (JIA) when he was 19 months old, and his life has been one of medication, joint pain/swelling, injections, wheelchairs, and teasing during his elementary school years.
"The kids thought it was just hilarious to tease me," said Johnson, a youth ambassador for The Arthritis Society, at Crestview School last Thursday.
He said he was teased because his arthritis, which affects about 1 in 1,000 children, is a debilitating condition that slowed his growth and kept him from doing what other children did.
"Ignore the teasing," was his advice to others living with JIA.
"Don’t let it hold you back. You can do what they’re doing, it might just take you longer."
Johnson was at Crestview — his younger brother Ian’s elementary school — to help the society promote three new programs: A national childhood arthritis advisory committee, a backpack program for children 10 and under, and a donation program targeted at JIA.
Children from his brother’s class looked on and asked questions as Johnson’s physiotherapist, Monique Martin, used Ian to demonstrate the specialized backpack The Arthritis Society is distributing to children with JIA.
Wider straps and extra padding minimize pain on affected joints, she said. Inside the pack is a teddy bear with a hot/cold pack so children can treat their symptoms.
"If their joints are stiff, heat helps…helps them get moving in the morning. The cool is for pain relief," Martin said.
Also included in the packs are pencil holders that make it easier for JIA-affected children with swelling in their fingers to write, and a book with information about JIA.
Afterwards Jim Rondeau, MLA for Assiniboia, read GrrrOuch! Pain is like a grouchy bear, a book about pain and JIA, to the children.
Lynne McCarthy, divisional advisory board chair for The Arthritis Society of Manitoba/Nunavut Division, said the misconception that arthritis is a disease that only affects the elderly acts as a barrier to progress in the battle against JIA.
About 250,000 people in Manitoba have arthritis, including about 600 children under 16, she said.
With Johnson’s JIA in remission for three years now, he has stopped taking medication and only goes for physiotherapy once every three months, whereas most children with active joint swelling due to JIA need therapy every two weeks, Martin said.
Today Johnson enjoys swimming, playing piano and riding his bike. He also has a brown belt in karate. Although in remission, JIA left him with affected joints that he has to work to keep limber.
The society reports he has been a valued youth ambassador, promoting the Walk to Fight Arthritis and taking part in several speaking engagements to raise awareness.
For information about JIA or The Arthritis Society call 204-942-4892 or go online to www.arthritis.ca