Lili-Jeanne was diagnosed with childhood arthritis in 2005, at just 18 months of age. While the disease symptoms are now under control thanks to ongoing medical treatment and careful management, Lili-Jeanne has endured more than her fair share of hardship, which makes the teenager’s boundless energy and enthusiasm all the more inspiring.
When Lili-Jeanne was just a toddler, her parents noticed she was limping as she was pushing her doll in a little stroller. They thought she had fallen and hurt her left knee since it was quite swollen. Their daughter’s good spirits had not changed though, so they didn’t think there was anything to worry about. When the swelling didn’t go down, however, they decided to consult her pediatrician, who recommended a series of blood tests. They were then referred to Dr. Chedville, a rheumatologist, who diagnosed Lili-Jeanne with juvenile idiopathic arthritis. Her parents were devastated to learn their young daughter had a chronic disease. They had no idea children could also be affected by arthritis and were faced with the unknown.
Many adjustment problems arose. A difficult family situation resulted in Lili-Jeanne taking her medication inconsistently, reducing its effectiveness. Constant fatigue and a weakened immune system left Lili-Jeanne subject to frequent colds and viruses. Her condition became part of the family’s daily life, with the illness having an impact on every member’s work schedule and activities.
Impact on the family
Difficulty adapting to the situation and keeping a healthy communication between themselves put pressure on the family members. Their lifestyle had been disrupted: for example, Lili-Jeanne’s night pain caused everyone lack of sleep. The family feared hospital appointments, worried they would leave with bad news. The number of appointments was also problematic, preventing Lili-Jeanne’s mother from holding down a full-time job. Ultimately, the disease caused isolation: because childhood arthritis is misunderstood, their daughter’s disease was regarded with incomprehension by family and friends. Fortunately, Lili-Jeanne’s relationship with her mother has always been one of compassion and understanding.
Impact on Lili-Jeanne’s life
Lili-Jeanne regularly attended day care. The child care staff was patient and especially attentive to her mobility and dexterity issues. Things were going well. Entering primary school proved to be different though: the struggles the family had been dealing with at home had real-world consequences now. For instance, because of Lili-Jeanne’s medication side effects, she often missed school days, and her teachers questioned her mother’s dedication.
Lili-Jeanne felt isolated: she could not participate in activities kids her age usually engage in. When she was invited to children’s parties, she would sit in a corner while the other kids played ball. She learned to live with it, but nonetheless felt judged by the other children.
Challenges faced by Lili-Jeanne
Lili-Jeanne’s frequent absences and her episodic arthritis flares undermined her ability to fit in at school. Other children thought she was pretending to be sick and often refused to work in teams with her because of her low attendance. Luckily, things changed in high school, where she has made new friends.
The medication Lili-Jeanne was taking was extremely hard on her body. She was forced to abandon methotrexate, which had caused her unbearable side effects: severe vomiting, dizziness, fever, hair loss, extreme fatigue. Her health was very quickly deteriorating.
A regular at the Kids on the Move Camp
For the past six years, the Arthritis Society’s Kids on the Move camp has been helping Lili-Jeanne cope with the challenges imposed by her disease. Spending a week every summer in this camp for children living with arthritis allows her to get valuable tips and advice on how to better manage her disease from a medical team and from new friends who, just like her, are living with childhood arthritis. Lili-Jeanne admits that the camp helps her get through the school year, as she knows she is supported by her new camp friends.
Lili-Jeanne’s arthritis has been less active for five years now. The teen sees things in a positive way: “The disease has opened my eyes about the world that surrounds me and has enabled me to better understand others who suffer from chronic illness. At the same time, I am afraid that my disease might take away opportunities to be with my friends or hold me back from playing sports.”
As time passes, Lili-Jeanne sees herself as less different from other kids, except when she can’t practise the same sports as her classmates, especially in gym. Apart from that, everything is going really well! “I have friends, and I often hang out with them. I am achieving remission, I’m rarely in pain and I barely miss school.”
Lili-Jeanne would love to travel, especially to visit major theme parks like Disney. When she’s older, she would love to work for the Arthritis Society, or maybe even become a rheumatologist. But her greatest dream, as you might expect, is to be completely cured of her arthritis.