A painful road
Coping with the aches of juvenile arthritis can be a lonely battle for kids
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Hey there, time traveller!
This article was published 26/02/2018 (1680 days ago), so information in it may no longer be current.
Putting on a happy face at 5 a.m. is challenging enough. Try mustering the enthusiasm required for a morning radio show when your child has been laid low by a mysterious illness for several days that leaves him in tears every time he moves.
That was the experience of Phil Aubrey, a.k.a. Philly, a little more than a year ago when his son Jack came down with what was assumed to be a particularly long-lasting bout of the flu.
“It was challenging,” says the co-host of Power 97’s morning show.
“No matter what’s going on in your life you’ve got to come to work and be ‘happy’ and at the time, my wife and I were both convincing ourselves he just a really bad strain of the flu, hoping for the day when he would just pop out of bed feeling better.”
That never happened, and the fever, aches and stiffness persisted for more than two weeks prior to the holiday season in 2016.
“He eventually was not getting off the couch, and when we would go to move him, he would cry,” Aubrey says about his son, who was five at the time.
He and his wife Stacey had taken Jack to emergency at the Children’s Hospital at Health Sciences Centre a few times already, assured with each visit that “he just had a bad flu,” Aubrey says.
But the Winnipeg couple sensed their son suffered from something more.
“The turning point for us was on Christmas Day,” Aubrey says. “It’s the biggest day of the year for him and he wouldn’t even get out of bed to look at what he had, so my wife said to me ‘We’re going back and not leaving until we get answers.”
They soon did get an answer — one that would profoundly change their lives and even more so, their son’s. Jack was diagnosed with systematic juvenile arthritis. It affects about three or four children in 100,000, and is a rare form of a childhood disease that often flies under the radar.
That being juvenile arthritis.
As such it often can go unrecognized by parents who assume their child has come down with nasty virus causing aches and fever — as the Aubreys did. Yet even health-care professionals can initially have difficulty recognizing the symptoms for what they truly are. Again, it’s a challenge Jack and his parents experienced.
And it’s this lack of awareness that fundraisers like the upcoming fourth annual Faces of Childhood Arthritis Luncheon on March 9 at the Metropolitan EntertainmentCentre aim to change.
“For me I jumped at it because it’s so close to my heart,” says Aubrey, who will MC the event.
“I would want to be involved in anything that can raise awareness.”
Arthritis Society regional manager Donna Wills says 230 people are expected to attend, which will feature Winnipeg pediatric rheumatologist Dr. Kirsten Gerhold, who diagnosed Jack, as keynote speaker.
The event — while serving as a vital opportunity to heighten public awareness of the disease — will also raise funds for a summer camp at Lake of the Woods for children with juvenile arthritis.
Wills says children with arthritis often face challenges attending traditional camps.
At the Arthritis Society’s camp, they can be themselves, she adds. Equally important they make friends facing similar challenges associated with a chronic illness that may require treatment for life.
Juvenile arthritis is often called ‘idiopathic,’ meaning its cause is not definitively known. What is certain is the immune system turns against the body, often causing joint inflammation, stiffness and pain. But in about 10 per cent of cases it can be systematic, causing fever and inflammation of the lining of the heart and lungs, and enlargement of the spleen and liver in addition to pain and swelling in the joints.
A form of rheumatoid arthritis, it is treatable with anti-inflammatories, steroids and biologics — a class of drugs targeting proteins responsible for causing inflammation.
The medications allow children and adults with rheumatoid arthritis to live mostly symptom-free.
“For me it’s normal because I’ve had it since I can remember,” says Matthew Stipanovic, 14, who was diagnosed with juvenile arthritis before age 2.
“I’ve had a lot of doctor’s appointments, so I miss a lot of school, and some kids would think that’s a good thing.” He sometimes does too, he admits.
“Then I remember I have to catch up.”
Taking medication is also part of the routine.
“I have to take daily pills, and one weekly needle and one monthly needle,” says the Grade 8 student, who has an aptitude for math, a love of science and a desire to pursue a career in robotics.
“For other people that may seem like a lot, but for me it’s normal.”
Stipanovic’s easygoing nature and seemingly bottomless reserves of courage to deal with what may come are a source of strength for his parents, who often feel an uneasiness about the future.
“There are so many things that can potentially go wrong,” says his mother Ana Stipanovic, a registered nurse.
Besides pain and inflammation of the joints, her son is also at risk of going blind. He has had more than a dozen eye surgeries to reduce pressure in his eyes and prevent him from losing his sight.
While the medications — which includes methotrexate, a chemotherapy drug — largely allow him to live normally, the drugs suppress his immune system, increasing the risk of infection.
“Two years ago, I had a major flare because I got strep throat, which to most people is not much of a problem, but because of it I couldn’t take some of my medication and my arthritis spiralled out of control.”
Adding to the challenges is how few people know about the illness. Even Stipanovic’s mother didn’t recognize her son’s symptoms initially.
“I have a master’s in nursing, and I really didn’t see what was going on until my mother said that he was walking kind of funny,” she says.
Its relative rarity can make dealing with juvenile arthritis “a very lonely road,” she adds. “For many years, we navigated it on our own.”
Today, patients and families are increasingly referred to the Arthritis Society connecting them with families facing similar situations, she adds.
Indeed, being able to hear stories of others can be a tonic for families, anxious and uncertain following a diagnosis.
“I know it helped us to hear others’ stories about what to expect and how they deal with all of this,” Aubrey says. “That’s a big part — knowing your family isn’t alone.”
Updated on Monday, February 26, 2018 8:19 AM CST: Adds photo