Genevieve Robert wears a patch over her eye for two hours every day to help cure one of the nasty effects of juvenile arthritis.
It's a necessary routine for the seven-year-old Prince George girl as she recovers from cataract surgery. But it was a novelty for her Grade 1 classmates at Heather Park elementary school when their teacher asked them to wear eye patches in class for the entire afternoon, just to allow them to experience the dark reality of Genevieve's disease.
"That was fun," said Genevieve. "They seemed to like it, but they were were all fussing about it. Not me. I'm the only kid in the whole school who has to wear an eye patch. I don't like it."
Diagnosed with juvenile arthritis at 18 months, powerful anti-inflammatory drugs have reduced the pain she suffered as a toddler, when she reacted with screaming protests whenever she tried to stand on her feet or if her mom buckled her into a car seat.
Genevieve marvels at the fact she can now run and jump and play with her friends in school, things she could never do only a few years ago. While her mobility is much improved, she is still recovering from a three-hour surgery in January 2012, in which doctors removed the lens of her left eye. The procedure was complicated by the fact there were no obvious signs of yellowing, as seen in most older cataract patients. Doctors say there's a good chance within a few years the vision of her right eye will deteriorate to the point where she will have to have the lens of her right eye removed. Three months ago, Genevieve had glaucoma surgery to relieve pressure in her eye.
Although rheumatoid arthritis is one of the most common childhood diseases, affecting one in 1,000 Canadian kids under the age of 16, it is more commonly thought of as an adult disease.
"You don't expect your less-than-two-year-old girl to have arthritis, I had no idea kids could get it," said her mom, Jeanne Robert. "This poor little kid was so sore for so long before we discovered it. It takes your breath away to think about what she's been through. As a mom, the biggest challenge we face is it is invisible, you'd never know she has it. Some days she's perfectly normal, and that can change overnight."
Genevieve was living in Vancouver when doctors put a name to her affliction. Her doctor asked Jeanne to videotape Genevieve's morning routine because she was too young to tell exactly where her pain was coming from. By watching her in the videos, not moving and pointing to her legs repeatedly while flexing her wrists, eventually the correct diagnosis was made.
Her arthritis affects her knees, ankles, wrists and fingers. At first she was given Naproxin and injections of corticosteroids into her joints to diminish the swelling. That led to several rounds of methotrexate, the same drug given as chemotherapy for cancer patients. Two years ago, her condition worsened and severe swelling went to her eyes, prompting a switch to the powerful biologic drug, Remicade, which has helped her mobility considerably. It took more than a year on Remicade before the eye swelling subsided enough to allow the surgery.
"Now I can climb in the playground," she said. "When I was a baby I couldn't."
Added Jeanne, an entomology research scientist at UNBC: "The doctors in Vancouver are quite excited about this group of drugs and she has responded very well, her physical activity is way up there. When she was two or three she couldn't walk a block, could not run, or go up or down stairs. This drug works well on people who have eye complications."
Genevieve now wears a contact lens to take the place of her own lens and while the kids at school are in playtime, she waits for her teacher to give her eye drops. Her treatments require frequent trips to B.C. Children's Hospital in Vancouver because there are no pediatric rheumatologists in Prince George. Two years ago, Jeanne and her husband Terry made 17 round trips to Vancouver for Genevieve's treatment and last year had to make seven visits. They're hoping to keep it down to two trips this year.
The Arthritis Society of Prince George offers support groups that meet monthly on Wednesday afternoon at Studio 2880. The group is planning an arthritis fundraising walk on Saturday, June 8 at Masich Place Stadium and Genevieve plans to take part in it.
"I want to help people with arthritis," she said.
For more information go to Arthritis Walk Prince George page on Facebook.
