World Lupus Day:

Hunter’s Journey from Diagnosis to Mentorship and Research

This World Lupus Day, we’re honoured to share a guest blog from one of our incredible youth mentors, Hunter. Diagnosed with lupus at just nine years old, Hunter faced more than most kids his age. Now at 24, Hunter works as a research assistant at SickKids Hospital in Toronto, helping to improve our understanding of lupus and mentoring others living with rheumatic diseases. Read more about Hunter and his journey below.

Looking to chat with someone who just gets it? Check out the Cassie + Friends Youth Mentorship Program to connect with a mentor: cassieandfriends.ca/youthmentorship

Hi everyone! My name is Hunter. I’m 24 years old and currently work as a research assistant at SickKids Hospital, where I’m helping to better understand lupus!

My story with lupus began when I was nine years old. It started with intense back pain that made it hard for me to even get out of bed. Then, my arms and legs began to twitch. My parents took me to the hospital, where I was told I was having mild seizures and would eventually grow out of them. But that answer didn’t sit right with my parents. Less than two hours after we were discharged from our local hospital, we drove straight to SickKids.

From there, I was admitted and ended up spending the next three months in the hospital. The twitching got so bad that I couldn’t walk or even feed myself. Eventually, the doctors gave it a name: chorea. And shortly after, I was officially diagnosed with Systemic Lupus Erythematosus, or lupus for short.

After my diagnosis, the tests didn’t slow down. I had daily bloodwork, ultrasounds, bone marrow tests, MRIs, you name it. During this time, my kidneys began to swell, and I needed surgery to fix the problem.

Those three months in the hospital were incredibly tough. While my friends were out playing sports and having sleepovers, I was learning to manage a disease that forced me to grow up fast. But through it all, lupus gave me unexpected gifts: resilience, perseverance, and a strong sense of responsibility. As difficult as it was (and sometimes still is), I’m grateful for how it shaped me into the person I am today.

I won’t sugarcoat it, getting diagnosed and treated was exhausting. But I was lucky to have support from my friends, family, and the broader lupus community. The doctors and nurses at SickKids were amazing. They helped me feel safe and made sure I understood what was happening every step of the way, even at such a young age.

While Cassie + Friends wasn’t fully established yet when I was diagnosed, I eventually connected with others living with lupus and learned as much as I could. Now, I love sharing my story and offering advice to others facing similar challenges.

Lupus is a tricky disease. It doesn’t look the same in any two people, and the way it’s treated can be totally different from one person to the next. That can make it really hard for others to understand. A lot of the time, we look completely healthy, which is why so many of us hear the phrase, “But you don’t look sick.” In those moments, I’ve learned how important it is to speak up. I’ve worked hard to build my communication skills so I can explain how I’m feeling to my doctors, friends, and family. Advocating for myself and now for others has been a huge part of my journey.

Lupus is definitely challenging, but it does not define who we are. Over the past 15 years, I’ve learned to embrace my illness. It’s taught me how to be stronger, more resilient, and it’s given me life lessons that many people take decades to learn. These days, I live a completely normal life because I know my body and understand my disease. It’s so important that we keep advocating, keep educating others, and stay hopeful. It might be tough right now, but I promise it will get better. One day, you might even see it as a blessing instead of a curse.

Don’t be afraid to ask for help. This disease is hard to face alone, but you’re never alone. There’s a whole community out there ready to support you.

Keep going. We’re all warriors.