Winnipeg Free Press - PRINT EDITION

Juvenile arthritis a surmountable struggle

Not holding young sufferer back

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Colin Johnson has achy-stiff joints, uses a walker and wheelchair and must take breaks during activities. But Colin is not an elderly man; he's 14 years old.

Colin was diagnosed with arthritis when he was 19 months old after his parents noticed he was not walking properly. After a trip to their doctor and a specialist, it was confirmed Doris Johnson's little boy had arthritis.

"It was very hard," said Doris. "We thought it was an old person's disease."

Beginning medication and therapy to combat the stiffness was one thing; starting school was another.

"It was lonely because the other kids didn't understand," said Colin. "I was bullied because I couldn't do the other activities with them."

He is one of approximately 61,500 Canadian youth and children under the age of 16 with arthritis. An inflammation in the joints, in children it is called juvenile idiopathic arthritis and can cause chronic disability.

"It's an inflammation in the sack in which the joint sits," said Dr. Kim Oen, Colin's doctor and head of pediatric rheumatology at Winnipeg's Health Sciences Centre. She has been working with arthritis patients for 30 years. "They have some pain and stiffness, usually in the morning. Sometimes it's painless, but it can be very painful... So we try to treat so they don't have any symptoms."

Oen reminds parents arthritis does happen in children, so if they are suspicious of a swollen joint, don't wait to see a doctor.

The Arthritis Society has named March Childhood Arthritis Month. They are asking for donations and will be holding events and starting new programs. Events include a Twitter chat March 14, a Facebook chat March 21, and a Google Hangout March 28.

New programs will directly aim at helping those with juvenile arthritis. The first will be the National Childhood Arthritis Advisory Committee, a Backpack Program for children newly diagnosed and a Donations Program to fund research and programs targeted specifically toward addressing the challenges of childhood arthritis.

Colin found strength, friendship and a sense of belonging at the society.

"I felt like I wasn't alone anymore," he said. "There are so many people and kids with arthritis, so you are never alone."

In return for their support, Colin and his mother volunteer at the arthritis society to raise money and awareness.

Colin has also done speaking engagements to crowds up to 700 people.

"I don't get nervous because I write and prepare and practise the speeches," said Colin.

"I've raised $400 on my own for the society before."

Oen said though they do not know where arthritis comes from, they are starting to understand it more.

"It's not an easy thing to do because things fluctuate all the time," said Oen. "But one way to look at it is with inflammatory proteins, but now that we know which are high and which are low, we want to know the opposite... what happens when you go into remission."

Colin is able to do more activities and events for the Arthritis Society because he is in remission. He is getting better, and he can deal with his arthritis with fewer drugs and therapy. But it wasn't always that way.

"Some days it was just too much," said Doris. "We had to pin him down so they could draw blood for tests... It was too much and I would have to call my parents to take him."

As well as drawing blood, taking medications and undergoing physical therapy, Colin was forced to loosen his joints in a hydrotherapy tub. At first, he travelled to hospital for the therapy, so the Johnsons installed one in their home because Colin was using it three times a day.

"He would get up and be so stiff, so he'd use the tub in the morning," said Doris. "Then he would come home so tired and have to use it, and then finally before he went to bed."

Oen said patients and families need to stay hopeful.

"Children do get arthritis," said Oen. "But treatment is good and remission, even if it is on medication, is good."

Today karate, or more specifically Goju-ryu Meibukan, is Colin's passion. His classes are self-defence and do not involve a lot of impact, so it's easier on his joints. Though he doesn't compete, it does make him feel safer walking around.

"I feel more confident," said Colin. "I've made a lot of friends there."

After being bullied at school, karate was a fresh start to make new friends who understand his disease.

Currently, Colin has his brown belt but plans on getting his black next December.

"Arthritis will always be part of my life," said Colin. "But I'm still going to live it."

steph.crosier@freepress.mb.ca

Rates of juvenile idiopathic arthritis in children under 18 years old:

 

117

per 100,000 in Manitoba

 

94

per 100,000 in Saskatchewan

 

 

80

per 100,000 in Quebec

 

 

-- Dr. Kim Oen

Republished from the Winnipeg Free Press print edition March 6, 2013 B2

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