For muscle health researchers, understanding how disease affects daily life can be difficult to capture.
At York University, researchers are addressing that gap by bringing patient partners into the conversation to learn from lived experience.
Through its Muscle Health Research Centre (MHRC), York is advancing research that connects scientific inquiry with the lived realities of people affected by conditions and diseases that impact muscle health, ensuring that studies and knowledge-sharing efforts account for how mobility, independence and quality of life are impacted.
The approach recognizes that certain aspects of muscle health are difficult to fully capture without perspectives from those navigating these realities daily.
“Recognizing lived experience as a critical source of knowledge helps to inform future research, education and public understanding related to the real-world impacts facing those living with muscle health disease,” says Christopher Perry, Faculty of Health professor and director of the MHRC.
This perspective is particularly relevant for individuals living with mitochondrial disease, a rare genetic condition that affects how cells produce energy.
Working with patient partners, Perry says many report that muscle weakness, fatigue and changes in mobility can cause decline in the ability to execute everyday activities, plan long term and maintain independence. It’s these factors, he says, that are often difficult to capture through clinical measures alone.
“For individuals living with mitochondrial disease, changes in muscle function can emerge gradually or after long periods of stability,” he says. “As mobility declines, the impact extends beyond physical symptoms, requiring adaptation to both physical and emotional well-being.”
Kate Murray, CEO of MitoCanada, says when this decline happens, individuals experience a sense of loss.
“There’s a grieving process for the life and independence they once had,” she says. “From our perspective at MitoCanada, a big part of what we try to do is make sure lived experiences are part of the conversation and stay grounded in what people are navigating in their lives.”
Adding to the challenge is the absence of disease-specific treatments. However, patient partners share one approach helps: exercise.
Resistance and strength training for those living with mitochondrial disease can help maintain function and independence – and Murray says it's important to rethink what exercise can mean in this context.
“I’ve heard community members describe exercise almost as a form of hope. They feel empowered and optimistic about the potential to slow their decline or maintain what they have,” she says. “For these individuals, exercise isn’t about performance or pushing limits, it’s about maintaining function, independence and quality of life.”
Patient partner Louise Gibson, a mitoAmbassador and community advocate with MitoCanada, shares this perspective and will present her insights and experiences to York researchers at the upcoming Muscle Health Awareness Day (MHAD), now in its 17th year.
As a patient advocate, she brings lived experience into research and education settings, helping inform health care teams, support patient education and advocate for greater awareness of rare diseases.
She also emphasizes the role of accessible exercise in maintaining function and quality of life for people living with mitochondrial disease.
“It is difficult to fully understand the conditions we study without hearing from people who live with them every day, which is why the Muscle Health Research Centre is focused on creating space for those voices and finding better ways to ensure they are heard,” says Perry.