Surviving Arthritis with Kid-friendly Health Information: A Personal Story

Most think of arthritis as an “old” disease—but kids can have it. And since they can, there should be kid-friendly health information...shouldn't there?

arthritis

As captain of my high school volleyball team, an avid skier and skateboard enthusiast, you might not guess that I have arthritis. In fact, I’ve been living with it for the past seven years—ever since I was diagnosed at the age of 11.

Most people think of arthritis as an “old people’s” disease, but that’s not the case. Juvenile Idiopathic Arthritis (JIA) is a form of childhood arthritis that affects kids and teens. JIA causes severe pain, stiffness and swelling in the joints and, depending on how severe the arthritis is, can cause eye inflammation as well as impact bone and joint growth.

While you may have never heard of JIA before, more than 24,000 Canadian children live with arthritis and suffer from the chronic pain it causes. In fact, arthritis is one of the more common disorders resulting in chronic disability in children and teens in Canada, affecting more than 3 in 1,000 Canadian kids.

Before I was diagnosed, I was angry all the time because I didn’t understand why I was constantly in pain and dealing with extreme stiffness on a daily basis. My coordination was off and I was unable to move my hands to where they needed to be, making me feel like the clumsy kid in class. It even got to the point where I was breaking bones trying to participate in the sports and activities I loved.

When my parents took me to see a pediatric rheumatologist and I was diagnosed with JIA, we were all shocked because despite all the signs and symptoms, we didn’t know this was something that you could get at such a young age. Since then, I’ve learned that kids as young as 18 months can be diagnosed with childhood arthritis.

It was a relief to finally understand why I was in so much pain, and the diagnosis also meant I could get started on a treatment plan to help manage the symptoms. Equipped with my treatment plan, support from my parents and information from my healthcare team, I was able to start the process of managing my disease and listening to what my body was telling me about the limits of my physical activity.

Now that I am 18, it’s time to start planning for my transition into the adult health care system. Thankfully, my doctor has encouraged me from a young age to learn more about my disease and take responsibility for my diagnosis, treatment and symptom management.

As a result, for the last couple years I’ve been gradually learning more about what JIA is, how to explain my symptoms to adults and doctors, why my treatment is important even if I am not experiencing symptoms, and how to properly administer my medicine myself, which includes a weekly injection that my parents used to have to give me (like a lot of kids, I was afraid of needles), but I now do on my own.

Since JIA is a chronic illness with no cure, this education is an important part of me being able to manage my JIA in the future without the help of my parents.

I have to admit that this education process has been challenging for me at times, since most available health information is targeted towards parents and doctors. How often do you see kid-friendly material when you walk into your doctor’s office?

Thankfully, The Arthritis Society recognized the gap in useful material for young people around medicine and health, and are launching a comic book on childhood arthritis to help give kids like me access to medical information we can understand. As someone who has been trying to educate myself about my disease, I’m glad to see a tool like this coming out and I’m sure it will help other kids with JIA.

The comic book was written by rheumatologists, and reviewed by members of The Arthritis Society’s Childhood Arthritis Advisory Council, which includes doctors, therapists, social workers and—most importantly—young people  who are coping with the disease and their parents. The result is a great resource for helping kids with JIA learn to understand and take control of their care, and it’s a pretty entertaining read.

The book is based on a group of five superheroes—the “MEDIKIDZ”—who each specialize in different parts of the human body. The characters make learning about JIA more interesting than the typical boring handouts you get at the doctor’s office.

In the book, the superheroes guide a girl with JIA through the body to explain the disease—showing her what happens when her body’s autoimmune system gets out of whack, triggering her symptoms and damaging her joints. It also explains tests doctors might perform to get the right diagnosis, different types of JIA, and some of the options available to treat it.

By presenting the information in a way that kids can understand and relate to, it encourages us to take a more active role in our diagnosis and treatment. The book is also a great tool that provides accurate information we can use to help explain our disease to other kids, adults and even other members of our health care team, helping us become better prepared to take more responsibility for our own care as we grow.

The Arthritis Society is making it easy for kids to get a hold of the comic book by distributing hard copies free of charge to families during various childhood arthritis-themed events and workshops, and by making a flipbook version you can read online through their website at www.arthritis.ca/childhood.

Coping with this illness has been tough on me and my family. Despite having to make sacrifices and adapting to this new “normal,” having medical information I can actually understand and relate to has had a positive impact on my life. I am proof that as long as you’re equipped with the right information and support, it is possible to lead a healthy and active life—even with arthritis.

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