Emma Linsley began experiencing fatigue, weight loss and joint swelling as a teenager. Pediatric rheumatologist Dr. Alan Rosenberg happened to be the on-call doctor who was able to identify and diagnose Linsley's disease. (Submitted photo)

My disease does not define me: a patient’s perspective on research

Emma Linsley managed to power through fatigue and weight loss, but when her joints started to swell, she and her family knew something was wrong.

By Researchers Under the Scope

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"I thought I would have to quit all my sports, and that I wouldn't be able to do all the things I loved," she said. "This is something that's going to play a role in the rest of my life."

In this episode, we look at research from her perspective, as a teenager and young adult navigating the medical system as a patient with a chronic illness.

"Nobody wants to be ill, but I've really tried to take a positive approach," said Emma Linsley. "I never wanted my illness to define me."

When pediatric rheumatologist Dr. Alan Rosenberg, her specialist, explained the medications she was taking simply weren't available 10 years ago, it sparked Linsley's affinity for science, even shaping her career choices.

"This was a very hopeful message I leaned on," said Linsley, who credits her treatment team with encouraging her to listen to her body, to set goals and achieve them.

"I made the best of the situation and took the opportunities that it provided,” said Linsley.

That experience shaped her view of medicine. Linsley has since returned to Royal University Hospital to share her experience with residents, encouraging them to build real relationships with their teenage and adolescent patients. She’s also the Saskatchewan Health Authority’s patient representative on the Committee for Advancing Health Research in Saskatchewan.

All this motivates the second-year McGill science undergrad to keep striving to meet her own goals in the academic world.

"I could grow and achieve my goals instead of using my illness as a reason to not push myself,” Linsley said, who is now in remission.

Upon receiving her diagnosis, Emma Linsley thought she would have to quit all of the things she loved, including basketball. (Submitted photo)