Muscular Dystrophy Canada is proud to share our first peer-reviewed publication, recently featured in Health Expectations. The study explores the diagnostic journey of individuals living with limb-girdle muscular dystrophy (LGMD), a group of rare, inherited disorders that gradually weaken the muscles closest to the body’s core. These muscles include the upper legs, hips, shoulders, and arms, and LGMD often leads to challenges with walking, climbing stairs, or lifting objects.
What makes this work especially meaningful is that it was co-designed and conducted with individuals living with LGMD. It is uncommon for organizations like ours to lead peer-reviewed research in collaboration with clinical experts and people with lived experience. Muscular Dystrophy Canada believes this approach is essential to driving real and lasting change.
Using journey mapping, the study captures the realworld experiences of individuals navigating the health system from the onset of symptoms to diagnosis. It identifies common delays, gaps in care, and opportunities to strengthen support.
These findings are already shaping how Muscular Dystrophy Canada develops programs, delivers services, and advocates for change. They also offer valuable guidance to healthcare providers and policymakers.
Thank you to everyone who shared their story and helped bring this important work to life.
