KOTA KINABALU: Sabah Women and Children’s Hospital and U.S.-based non-profit Coalition Duchenne recently hosted the second annual Duchenne Sabah workshop, aimed at building a comprehensive, multidisciplinary care model for families affected by Duchenne muscular dystrophy (DMD).
Held at the Sabah International Convention Centre (SICC), the event served as a community outreach initiative for the hospital’s specialised Duchenne multidisciplinary clinic—one of the few programs of its kind in the region.
The workshop brought together doctors, educators, caregivers, and families from across the state for expert-led sessions, direct consultations, and hands-on physiotherapy led by the hospital’s physical therapy team.
Care Beyond the Clinic Walls
Duchenne muscular dystrophy is a rare, fatal genetic disorder that primary affects boys, causing progressive muscle degeneration due to the absence of dystrophin, a crucial protein for muscle stability. Those affected typically lose the ability to walk by age 10 and face severe cardiac and respiratory complications in their teens and twenties.
Dr. Elyssa Majawit, a pediatric neurologist at Sabah Women and Children’s Hospital and one of only two pediatric neurologists in Sabah, emphasized that addressing the condition requires support beyond medical interventions.
"Our hope is that every family affected by Duchenne will know that they are never alone. Together, we will face the challenges ahead, supporting one another and ensuring that no family has to walk this journey without hope, care, and a community standing beside them," Dr. Elyssa said.
"Events like this allow us to extend that care beyond the clinic walls and reach families who need it most."
Organisers highlighted that progress for young patients also hinges on overcoming social stigma and improving educational accessibility. In many communities, social isolation and a lack of accessible learning environments pose barriers as limiting as the condition itself.
Ensuring that affected boys can continue learning alongside their peers remains a key priority requiring greater attention and investment.
A Legacy of Support
Within living memory, boys with Duchenne in rural villages often went undiagnosed, labeled loosely under "failure to thrive" and passing away in their early teens. Today, continued investment in specialized care, awareness, and inclusion offers young patients a significantly brighter outlook.
The annual workshop is funded in part through Expedition Mt. Kinabalu, Coalition Duchenne’s flagship charity climb. Now in its 14th year, the climb has raised over RM100,000 for the hospital to fund vital equipment, care resources, and outreach programs.
"It is my hope that boys with Duchenne in Sabah are able to have the same level of care available in other parts of the world," said Catherine Jayasuriya, a Kota Kinabalu native who co-founded Coalition Duchenne in 2011 with her son, Dusty Brandom.
"We are not there yet, but the hospital’s commitment to these boys is extraordinary. Our role is to support that work, help break down the stigma these families face, and make sure families across Sabah know that they are not alone."
Through its Duchenne Without Borders initiative, supported globally and locally with aid from corporate sponsors like NS Pharma, Coalition Duchenne continues to supply underserved families with critical equipment such as wheelchairs, BiPAP machines, and care education across Malaysia and internationally.
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