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I'm Not Letting My Juvenile Arthritis Hold Me Back

Picture a day in the life of a student: running to and from classes, walking up a few flights of stairs, carrying a backpack writing or typing notes. Now, imagine if you could no longer do any of these things effortlessly because your joints ache. Imagine if your joints were just constantly in pain and you are only 18 years old.
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Alamy

Picture a day in the life of a student: running to and from classes, walking up a few flights of stairs, carrying a backpack writing or typing notes. Now, imagine if you could no longer do any of these things effortlessly because your joints ache. Imagine if your joints were just constantly in pain and you are only 18 years old.

I was diagnosed with juvenile idiopathic arthritis when I was roughly 22 months old -- a toddler. My name is Nikolas and I'm 18 now, and I, along with one in 1000 other Canadian youth, am living with arthritis.

Arthritis can be a crippling disease, but I don't let my diagnosis stop me from attempting any of the goals I set for my life. This month I have been asked to take part in raising the awareness of arthritis in Canada in honour of National Arthritis Awareness month and the launch of a Framework, called the Joint Action on Arthritis, to support individuals like myself who suffer daily from this disease.

This summer I had the opportunity to work with the first-ever camp for youth with juvenile arthritis on the East Coast. I was able to be a counselor for the first-annual camp Join Together, which I was given the honour of naming. Seeing all of the youth come together over a weekend was simply indescribable -- many of them just meeting others with juvenile arthritis for the first time!

This was also the first real time for me to be at a camp. All boundaries were removed and everyone was treated equally. There was no questioning when someone had to stop an activity, take a break or stop to take medication; there was no stigma about our disease. All of the youth shared their stories and completely opened up about their lives because we could all relate. This awareness, understanding and lack of stigma about arthritis should be reflected in all Canadian communities, what is stopping us?

Being a full-time university student this fall with two part-time jobs can be a daunting task -- especially having mobility issues with my knees and my back. I just recently purchased my books for my classes and I was completely shocked at the massive stack that was sitting on the counter. People are unaware that people living with arthritis face these obstacles -- who would think textbooks would pose an issue?

The Arthritis Alliance of Canada (AAC) conducted a report last year that illustrated that I am not alone. There are approximately 4.6 million Canadians living with some form of arthritis today. One in eight Canadians currently lives with some form of arthritis and, within our lifetimes, that number will rise to one in four.

Arthritis is misunderstood in Canada however it is the most common cause of disability. The AAC launched a Framework this week that will support youth like me. It encourages government, educational institutions, community members and health practitioners to work together to improve arthritis prevention, quality and efficiency of care and improve the lives of people living with arthritis.

As an advocate to raise awareness of the prevalence of arthritis in Canada, my hope is that the new Framework will improve the quality of life, emotionally, socially and economically for my arthritis peers.

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