MONTREAL – Simone Cavanaugh vividly remembers her first experience with juvenile arthritis. She was six years old and woke up in excruciating pain.
“I woke up crying,” said Cavanaugh, who is now 18. “My mom came to see what was wrong and my legs were really hurting me, my hips and my ankles especially.
“At first she thought I was exaggerating or it was growing pains, but I kept insisting that I was in pain. I wouldn’t stop crying for a few days.”
It took Cavanaugh two years to be properly diagnosed and get on medication that would relieve her pain and eventually leave her symptom-free, with the exception of a few relapses.
Before that, she would find herself using crutches to walk and then in a wheelchair, coping with an illness most people associate with the elderly.
Dr. Sarah Campillo, a pediatric rheumatologist at the Montreal Children’s Hospital, said juvenile arthritis actually strikes about one child in 1,000.
“If you think about it, it’s about one kid per school,” she said in an interview. “It’s quite prevalent. It’s one of the most chronic, common diseases of childhood.
“It can start as early as age one or sometimes even earlier than that.”
Awareness is growing about the disease, although researchers have not nailed down a cause or a cure.
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The pediatrician said researchers suspect it could be caused by a combination of genes and triggered in some children by a virus.
Campillo said it is not easy to diagnose because children aren’t great at expressing their symptoms. It is sometimes mistaken for growing pains or even sports injuries.
“Sometimes the disease starts very slowly, gradually, and I believe that young children sometimes get used to the pain and won’t report it to their parents,” Campillo said.
She said sometimes a diagnosis is made several months or a year or more after the onset of the disease.
But there are tip-offs.
“Often what parents will notice is a limp or a swollen joint or they’ll notice that the kid is slower in the morning because they have morning stiffness after having slept all night in the same position,” Campillo said.
“When kids wake up, they’re a bit slower in the morning, slower to get ready to go to school, slower on the stairs and so on.”
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She noted that growing pains, for example, typically occur in the evening or at night while arthritis is really felt during the day.
Treatment is offered through physiotherapy and medication, which can put the disease into remission as it did with Cavanaugh, although Campillo points out that “more than half the children will continue to have arthritis even as they become adults.”
Young patients have to be supervised closely to make sure they take their medication because, she said, teenagers being teenagers sometimes feel they can let it slip if they aren’t feeling any pain.
Cavanaugh said she wasn’t surprised by her diagnosis because the pain in her joints made sense as arthritis, which inflames the muscle and skeletal system. Friends and family, however, were often astonished by the cause of her illness.
“Lots of people have no idea that kids can have arthritis. Lots of people just didn’t believe me.” They’d tell her it wasn’t possible.
“Well, actually, it is,” the gregarious teen said matter-of-factly.
She remembers undergoing batteries of tests, trying different medications, homeopathic remedies and even acupuncture. She recalls how her ankles would swell, prompting her mother to good-naturedly nickname her “Elephant Feet.”
“But the problem was really the pain,” the junior college student said. “When I’m having arthritis attacks, just the weight of the sheets on my bed on my legs make me cry.”
Cavanaugh, who was born in Toronto, hit a turning point when her family moved to Montreal and a doctor gave the then-eight-year-old a new diagnosis and changed the medication, which came in an intravenous drip which took four hours to administer.
“I sat down, limping to the chair,” the young brunette said. “I sat down in pain and four hours later I got up from that chair, symptom free, literally.
“My sister and I had a little karate fight when I got home because it was the first time I could kick her,” she recalled with a mischievous laugh. Still, her bones and muscles were weak for a while.
Support is important for juvenile arthritis patients and their families.
Cavanaugh said her mother’s efforts were a large part of what helped her cope.
The Arthritis Society, which has branches across Canada, is vital in helping people deal with the disease at all ages, providing programs, support and information through a variety of means including phone lines and an extensive Internet site.
“We have a lot of people that are calling our 1-800 line that just received the diagnosis, have no information, they’re not aware of what the sickness is and they are afraid,” said Michelle Brisebois, director of educational services for the society’s Quebec branch.
Brisebois noted that with the health-care system stretched as thin as it is, people sometimes only meet briefly with a specialist and don’t always think of questions they’d like answered. That’s where the society can help, she said.
“They’re not alone,” she said.
Brisebois said, for example, the society runs summer camps to not only give patients and parents a break but to put people in touch with others like them in support groups so they can talk about how to cope with the disease.
There are also volumes of literature, which the society compiles with the help of doctors and specialists. The organization also helps to raise money for research.
Cavanaugh, who plays the violin and hopes to be a pediatrician, works with young patients in her spare time, saying it’s important they have a role model.
She said she wasn’t much affected emotionally by the disease until she got to high school because it was then that she felt she was different from others.
Cavanaugh said, however, that she never had the problems of some children she’s talked to who were teased because they were in wheelchairs or because their medication made their faces bloat.
“They don’t want to be different,” she said of the kids she sees struggling through their days when she works at the society’s summer camp.
“I tell them that being different, having arthritis – you have to look at it not as a problem or an obstacle but as something to take (on) and grow with,” said Cavanaugh.
She said her mother didn’t sugarcoat her situation but also said there’s nothing wrong with being different because “it’s not good to just go with the status quo.”
Cavanaugh said often the children she meets are more mature and their struggle will help them grow in their lives. Her philosophy is simple.
“Show everyone what you can do no matter what goes on in your life.”
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