Living with juvenile rheumatoid arthritis

ERIN POTTIE
The Cape Breton Post

SYDNEY MINES — Sometimes his fingers are so weak he’ll turn a door knob with the palm of his hand. Other times it’s the way he holds his fork or takes notes on the classroom computer instead of writing them by hand.

Each day is different, but there are a few tricks 17-year-old Michael Perry has learned in coping with his systemic juvenile rheumatoid arthritis.Arthritis  is one of the most common chronic illnesses affecting children. One out of every 250 kids has it — though it is often perceived as a disease of the elderly.March is Juvenile Arthritis Awareness month, which is recognized separately from its adult form. Unique features to Juvenile Arthritis are irregular growth problems causing discomfort, inflammation of the eye causing reduced vision, painful flare-ups, and disease remission that can come and go without warning.

Michael’s parents Paul and Charlene of Sydney Mines watched as a 7-year-old Michael fell sick one evening with a high fever and mysterious rash. He complained the touch of his bed sheet was excruciating.The Perrys took their son to the hospital, where he was diagnosed with a viral infection, one which attacked joints throughout his body.
There is no test for Juvenile Arthritis and it is often diagnosed in boys and girls after ruling out several other health problems such as Hodgkins, lupus and leukemia. Michael was tested for everything and his mother would be required to call the doctor each day to pinpoint the exact time of the fever and rashes, in determining the problem.
After being diagnosed with Juvenile Arthritis, Michael’s treatment included medications and regular trips to the IWK in Halifax for examinations.

Ice packs and Aspirin were once believed to be the only treatments for arthritis, though there are now several biologics approved by Health Canada for adults, and infliximab (Remicade) and etanercept (Enbrel) for children. In Nova Scotia, there is coverage for Enbrel under the family pharmacare program when prescribed by a rheumatologist
“We were going skating one time in Sydney and he was putting his skates on and getting on the ice . . . and he said ‘Mommy my arthritis is acting up I don’t think I can skate’ and this man behind me burst out laughing and (Michael) said, ‘No sir, I really do have arthritis,’ and he was like 8 or 9,” said Charlene.

 
A Grade 11 student at Memorial High School in North Sydney, Michael has come a long way in coping with his arthritis. In the 10 years since diagnosis, he has learned to live healthy by eating properly, exercising, and avoiding certain strains on his joints.
There are still “damp days” when he feels the pain of his condition at its fullest, and the illnesses also brings a weakened immune system causing Michael to catch almost any cold or flu that invades his school.

“It depends on what kind of day it is, I can feel a whole lot of pain. It’s not as bad as it used to be, before you’d think that there was probably something else wrong with me — not that active kind of thing, due to the loss of movement,” he said.

“He does know they’re are some things he can’t do. His teachers all through school . . . there is a very good support system with the right approach, you can get that support,” said Charlene. “They thought by the time he turned 18 it might leave so it’s looking up at the moment; but it might follow him into his adulthood.

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