The Perspective: Finding answers through clinical research

As far back as I can remember, I have always liked knowing how things work and why things happen. But not everything has an answer.

I learned that lesson when I was eight.

After tumbling down a hill, I came home scraped up. As a kid, that wasn’t unusual, but in the weeks that followed, my parents noticed unexplained bruises appearing on my body. After several appointments and referrals, I was diagnosed with lupus (SLE) at The Hospital for Sick Children (SickKids) in 2007.

At the time, that word meant nothing to me or my family. The doctors explained that lupus is an autoimmune disease, where the body attacks itself. But what didn’t make sense was that it usually presents in adult females and is often linked to family history. I was much younger than the usual age of diagnosis and the first person in my extended family to be diagnosed.

So, I kept asking one question: why me?

Saying yes to research

At eight years old, I could not run my own experiments to figure out why, but I could participate in research. During my appointments, research staff at SickKids would approach my family about clinical research studies and how I could contribute as a research participant. Each time, I said yes.

I wanted to help find answers, especially for childhood-onset lupus. When I was around 14, I joined a double-blind clinical trial testing to see whether a medication approved for adults could work for children. My lupus was flaring, and I was open to trying something different.

For 11 months during the trial, I received monthly intravenous (IV) infusions. Unfortunately, my condition worsened; I had developed retinal vasculitis and lost most of the vision in my left eye. At the time, we weren’t sure if it was from the medication, but either way, I had to withdraw from the trial to start a more rigorous treatment plan.

Later, I learned I was in the placebo group.

People often ask if I regret joining the trial. I don’t. There’s no way to know whether things would have been different outside of it. Instead, I see the experience as something that shaped me. It showed me how resilient I could be and changed the way I see research.

As a patient, research participation happened in small moments during long clinic days in between appointments. It became the norm that I would talk to a research associate about a new study that was starting before my doctors arrived. I looked forward to seeing a familiar face, being able to catch them up on the new things happening in my life and learning about the latest research areas they were exploring. At the time, this all felt routine.

Now, I better understand what those moments can represent for families: uncertainty about the answers the researchers may find and information overload that comes with understanding the study and science behind it. More importantly, there are difficult decisions about whether to join a study. In my case, my parents had to decide whether to allow their child to participate in a clinical trial where it was not guaranteed that I would receive treatment for 12 months. All while being asked to place trust in researchers and care teams. 

My experience taught me how research moves forward. Even when there is no direct or immediate benefit to the individual, every contribution matters and helps researchers answer questions.

For me, resilience and research became closely connected. Saying yes didn’t change my outcome, but it showed me how progress happens – one question, one study and one participant at a time.

From patient to giving back

That perspective stayed with me. I went on to study psychology at the University of Toronto and pursue a PhD in behavioural neuroscience, with a research focus on how social factors influence pain.

After leaving SickKids, I stayed in touch with the research coordinator who had supported my family since my diagnosis. Through him, I was invited to join a working group called the Lived Experience Network for Knowledge Sharing (LINKS) supporting Precision Child Health, a movement at SickKids to individualize care for every patient.

Now, I help review patient-facing materials and provide input based on my experience as a patient. I think about what questions families might hesitate to ask and how we can make information clearer and easier to understand. I support initiatives like PCHSeq at SickKids, which focus on rare disorders that do not always receive the same level of attention. Having experienced childhood-onset lupus, I understand how important it is for these perspectives to be included in research.

It’s about making participation feel less overwhelming and helping other families say yes with confidence.

Looking back

My journey has always been shaped by ‘why’ questions. Why did this happen? Why me? Why so early?

I may not have all the answers, but I have seen how research brings us closer.

For me, saying yes did not change my outcome, but it shaped the path I followed, into science and into advisory work that helps make research more accessible for the families who come next.

What started at as a simple “yes” became a path forward.