[Music] I was 3 years old when I was diagnosed. I was diagnosed when I was 6. I was first diagnosed with arthritis when
I was 12 years old, actually on my birthday. I was 13, in grade 8… I think I was 7, 8… yeah, 7, 8, around… Juvenile idiopathic arthritis, or JIA, affects about one child in every 1,000. Many schools have at least one student with juvenile arthritis in their student body. People are often surprised to learn that juvenile arthritis can start at any time in childhood, from 12 months to 16 years of age. I only knew about the arthritis old people usually develop… We never thought that even kids in grade 2,
8 years old girls, could get arthritis… The two main types of arthritis in kids are
oligoarticular arthritis, where the illness affects up to four joints, usually involving the knees, and polyarticular arthritis, which affects five or more joints, often including the fingers and toes. Children with oligoarticular JIA are also at risk of developing uveitis, or chronic inflammation in the eyes, which
can be very serious. Pretty much everywhere, like in the knees, in the wrist, in the jaw, in the eyes, also… because I had uveitis. It affected me mostly in my ankles, my wrists,
my toes and my fingers. The symptoms are really bad. Like hitting my knee with a hammer, it’s really bad! I have it in my knees and my ankles Usually, when I wake up, my fingers are really stiff and, like, I take a shower, so like I guess the heat in the shower kind of helps me, like, reduce the stiffness. It takes about an hour and a half to, like, exercise my fingers and just go through with my morning routine. It’s a longer process for someone with arthritis, like me, because in the mornings it is not as easy as others. And it’s kind of harder for me to get to school, so I wake up extra earlier than I am supposed to. So far, the actual cause of juvenile arthritis
remains a mystery. We do know that it’s an auto-immune disorder, where the body’s own immune system attacks tissues in or around the joints. The fluid in the joints causes pain and swelling. Eventually, this inflammation can lead to
permanent damage. Juvenile arthritis affects each child differently. Flare-ups can last weeks, or months, then go into remission, leaving the child symptom-free. When the disease is active, the pain can vary dramatically, even within the same day. And it was more in the mornings, in the morning it would hurt a lot, so my friends would see it would hurt a lot, but then after lunch it would be, like, all better. Then, they would think I was lying! I can’t do this, or I also remind them that I have arthritis and that I am hurting… Sometimes, they just… my teachers, they forget. It got to a point where I thought it was my fault, that I… that they can’t remember that I have arthritis… It has happened in the middle of a class, that my hands start hurting, then, like, my teacher gets annoyed and she’ll be like “you couldn’t have told me this like an hour ago?” I guess I kind of feel bad when that happens. I mean I can’t really control it, so… Juvenile arthritis can have a huge impact on kids’ schooling, starting with missed school days. Arthritis causes me to miss school all the time! Well some days, I didn’t go to school because I was in too much pain, like I couldn’t walk. I have to go see a lot of appointments, especially, like, my occupational therapist and my rheumatologist, because I have to go to a clinic to do my medication, ’cause I do it through intravenous… So I can’t really do that at home or at school. Kids with arthritis often face difficulties at school, in many unexpected ways. The biggest challenge is handwriting. Writing for prolonged periods causes pain, and it makes it makes it very challenging for those children to be able to finish their work on time. Again, if their hands are affected, to be able to carry their books around, the ability to open their locker… even the ability to open their lunch boxes and manage all the containers in their lunch box can be difficult. Sometimes, they are a little bit more slow, or they have a harder time managing stairs. Sometimes, my writing, like on certain days, when my hands get really bad, when my hands are like swollen or stiff, I can’t really read my writing. Usually, I write with my iPad, so I type.
It makes it a lot easier. Sometimes, I’d have to find other ways to write things instead of using my hands ’cause that was difficult. Children with arthritis need to take anti-inflammatory medications, to control the disease, and undergo regular blood tests. The medications often have side effects, and some medications put children at increased risk of infection. One medication is taken by injection, once a week, and it’s called methotraxate, and the other one is taken… has to be taken by infusion, once a month. They put injections in my fingers, in my toes… the day after the whole operation, everything sort of aches for a bit… I couldn’t feed myself at all, I couldn’t get up, I had to lay down and rest for a bit. I think I’ve used to take around… 54 pills per week. There are many simple ways teachers and educators can make a huge difference in helping young people with arthritis cope at school. What we do is we allow those kids to be score-keepers, sometimes they’ll do the marking in the books, sometimes they’ll help me with some equipment, so I am able to incorporate them into the everyday
class activities. I’ve had situations where I had to, where it’s…
I just couldn’t take it. And I had to sit out, especially during gym class. In gym class, my teacher knows my limits, so I would just do maybe two laps less than the other kids and still get a good mark, ’cause she knows that my knee and my hands are not always in good conditions… I take a look at what they have done and
I’ll just mark them on that. I won’t punish them for not being able to
do certain activities. Most children with arthritis move between the world of the well and the world of the disabled. Many will have periods when they can compete and keep up with others, but then need assistance or accomodation when their arthritis flares up.