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At the age of 11, Beatrice has already been living with the pain of arthritis for 9 years. Here is a bit of her story, as told by her mum:
When Beatrice was just two years old, our family received some shocking news: the pain and swelling she’d been experiencing in her left wrist was not a simple sprain or broken bone but, in fact, the result of the chronic, autoimmune disease called Juvenile Idiopathic Arthritis (JIA). We, like most people, didn’t even know that kids could get arthritis! My husband and I were devastated. Suddenly, we found ourselves navigating a world full of specialists and physical therapists and trying to come to terms with the aggressive treatments our baby would have to endure to best manage her disease. The pit in my stomach never seemed to go away. Over many wakeful nights and through many tears, it was hard not to hope that somehow her doctor’s had “gotten it wrong” or to think that our daughter would somehow defy the odds and not see her body irrevocably changed by the ravaging inflammation. Over time, though, we were faced with the realities of our situation. That reality consisted of Bea’s wrist staying swollen and painful for months as we waited for the three times a day high-dose anti-inflammatories to begin to work. It would mean having her joint injected with steroids. It would mean watching as our daughter’s wrist changed in appearance as it started to grow at an unnatural angle and worrying that her right wrist, her dominant hand, would become affected next. Eventually, Bea’s disease activity did decrease and her arthritis was deemed “inactive”. It was such a relief. But the thing is, this is a chronic condition. Just because the disease goes into remission that doesn’t mean it won’t come back, and so we found ourselves, even during these good times, worrying about when it would flare up again and which joints it would attack next. Because this is how Juvenile Arthritis behaves and, as many of you will understand from personal experience, you just never know where or when the disease will decide to show up. Sure enough, only a few months after Bea’s wrist had calmed down and she had been able to come off her anti-inflammatories, her ankle swelled up. She had never had an affected joint in the lower half of her body and it was clear that this was going to prove very frustrating for her. Running, jumping and even just plain walking was now painful and being a "typical" kid was going to be a challenge. There would be many days when she was so uncomfortable that she would have to crawl instead of walk up stairs and often have to be carried or put in a stroller when getting around. This also coincided with Beatrice beginning full-day kindergarten at a new school and it was becoming increasingly clear that it was all too much for her. Being in constant pain, trying to keep up with the other kids on the playground (and failing) and having to take medicine at school in front of her classmates was so hard for her. She just wanted to fit in. Though she was usually able to hold things together while in front of other people, at home she would fall apart. She began crying every morning and night and seemed unable to enjoy the things she usually did. This time around the severity of the inflammation was even greater and Bea would need more powerful systemic drugs to get a handle on her disease before it damaged her ankle beyond recognition. Her dad and I were shown how to inject her with Methotrexate (a chemotherapy drug) which we would have to administer at home once a week. She would also be getting high-dose steroids to try and reduce joint inflammation while we waited weeks for the Methotrexate to start working . On top of this there were still the 3 times a day high-dose ibuprofen as well as folic acid, which would hopefully counteract the side effects of the Methotrexate which include nausea, vomiting and mouth sores, among others. The Methotrexate injections proved very difficult. Tears (both hers, her sisters’ and ours) were inevitably shed and sometimes it would take 2 hours to finally get the shot into her. All of the distractions we used to try and make the experience less upsetting could not change the fact that in the end she had to take her medicine. Afterwards I would feel horrible as Beatrice would have pleaded with me to not give her a shot. It was even harder when the Methotrexate made her vomit so much that we had to take her to the hospital. Explaining to a five-year old how a medicine that made her sick to her stomach was actually supposed to help her was a challenge. Needless to say, the innumerable medications, the side effects they come with (including the suppression of her immune system) and the disease itself were taking a huge toll on Bea’s emotional and physical well-being. At her lowest point Bea went almost two solid weeks without smiling. For those who know her this is unthinkable, as Bea’s most memorable feature almost since birth has been her ear-to-ear grin. She didn’t want to leave the house and could only be distracted from her discomfort when playing games. She didn’t even want to be read to and had almost no appetite. Fast forward 5 years and Bea is in grade 5 and still on her injectible medicine. Of the hundreds of injections she has now received only about the last 60 have happened without tears being shed. It hasn’t been easy but I think that she has finally come to terms with the fact that she will have to have them for at least the next few years, if not for the rest of her life. JIA is the most common cause of chronic disability in children in Canada, affecting every 3 in 1000 kids. That’s just as common as Juvenile Diabetes and far more prevalent than childhood leukemia and cystic fibrosis, and yet JIA remains dismally unknown (even amongst family doctors) and terribly misunderstood. The pain which comes with this disease, as well as the risks and side effects of the treatments are difficult to deal with. Really difficult. But the challenges certainly don’t stop there. We find ourselves constantly being given advice on how to either treat or to cure our daughter’s disease. I’ve been accosted in the parking lot at school by someone who knew of a “miracle cure” diet. I’ve had my hairdresser suggest a cream that she had gotten from her naturopath – it was certain to help. I was taken aback when the very teacher responsible for administering my daughter’s lunchtime meds shook her head at me and asked if I’d “explored other options”. Trust me, if there was a miracle cure, I certainly would have found it. With every suggestion, I feel blamed for my daughter’s suffering and I am consequently less and less able to be open and honest about my daughter’s disease and find myself more and more isolated, both emotionally and physically, from my community, my friends and even sometimes family. The reality of Juvenile “Idiopathic” Arthritis is that children are NO more likely to develop JIA after immunizations, infections, trauma or being on a certain diet. And 40% of children with JIA will have active disease or are on medications 10 years after onset. But there is hope. Over the past 10 to 15 years, new treatments have revolutionized the care and outcomes for many children with JIA. Today, the “new normal” for children living with JIA means thriving in the classroom and playing sports outdoors, rather than being housebound in a wheelchair, completely isolated from all the things that make up a childhood. And, as awareness of the disease increases, life for these kids and their families gets better as misconceptions are dispelled and what feels like blame turns to understanding. Charities like the Arthritis Society are giving hope to families like ours through their funding of research into new, safer, more effective treatments and by letting people know that kids get arthritis too. Please give to STOP CHILDHOOD ARTHRITIS.
This year the Walk for Arthritis is celebrating its 10th year - help make this the best year ever by making a donation to support this important cause!