To recognize Juvenile Arthritis Awareness month, we’re highlighting stories from the youth in our community: their diagnosis, their journeys, what they’ve learned, and most importantly, their advice. At Cassie + Friends, we believe that all kids deserve to live pain-free. In Canada, 24,000 children, teens and their families will be affected by Juvenile Arthritis and other rheumatic conditions. We are the only charity 100% dedicated to their needs and futures. In recognition of Juvenile Arthritis Awareness Month, we hope you will consider becoming a monthly donor so we can keep advocating for more research, awareness and resources for kids and families. Even just $10/month can help us reach our ultimate vision – a pain-free future for kids!

Thank you, Alyssa for sharing your story!

Hi! My name is Alyssa, I am 16 years old and I was diagnosed with Juvenile Arthritis two years ago. When my pain was at its worst and I went to the doctor, I was shuffled around from one doctor to another, each one referring me to a different specialist until eventually, I landed at McMaster Children’s Hospital. The staff at McMaster is amazing and I have had a very positive experience with them.

I started medication in the form of an injection (Methotrexate) and at first it was fine but the longer I took it, the worse the side effects hit me. This is absolutely not meant to scare anyone who is or is going to be taking this medication; this is simply my experience and everyone has different reactions to medications.

My symptoms started with being extra tired, and then as I continued taking the medication, tuned into nausea. The nausea got progressively worse every time I took the medication until eventually I had to stop taking it. I switched to the pill version of the medication and my symptoms got even worse- instead of nausea I was actually throwing up

One piece of advice I have for people experiencing symptoms from medication is that people aren’t going to understand what you’re going through. My advice for you is to find people who have experienced something similar so you have someone to relate to and talk about what you’re experiencing.

Around this time my doctor referred me to another doctor to test me for something called Turner syndrome. To give you some context, I am 16 years old and 4’9” tall. I have been short my entire life and I never knew why, until I was diagnosed with Turner syndrome- this explained why I was so short. It also explained a few other things, like how Turner syndrome is part of the reason I got juvenile arthritis. I like to think it’s a good thing I got arthritis or I might not have been diagnosed with Turner syndrome. Turner Syndrome causes me to be at higher risk for autoimmune conditions like arthritis.

Currently, I have switched to a medication that is so much better for me and I am doing much better. I have been taking the new medication for quite a while and have had no side effects. My flare ups have been minimal although around Christmas, I had some arthritis symptoms return, but was out of medication briefly so I imagine that is the reason why. For the most part, I feel great! Thank you for reading my story.

If you are interested in learning more about JIA, rare diseases or medications, check out our Virtual Education Library where we have webinars and resource pages on topics like these and many more. Interested in sharing your story? Email info@cassieandfriends.ca