By WU VUIDE
KOTA KINABALU: Efforts are being made to develop a more comprehensive model of specialised and multidisciplinary care for Duchenne muscular dystrophy, a disease that affects children worldwide.
The initiative was organised by Coalition Duchenne and Sabah Women and Children’s Hospital during the Second Annual Duchenne Family Workshop at the Sabah International Convention Centre.
“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,” said Dr Elyssa Majawit, paediatric neurologist at Sabah Women and Children’s Hospital.
“This is what we hope to achieve through the Duchenne Sabah workshop. Events like this allow us to extend that care beyond the clinic walls and reach families who need it most,” she added.
Families affected by Duchenne often face not only the physical effects of the disease but also social isolation and misunderstanding.
Workshop organisers said these barriers can be as limiting as the condition itself. Changing public attitudes is as important to a boy’s quality of life as any clinical intervention.
Many boys with Duchenne attend schools that are not equipped to meet their changing physical needs. Organisers stressed that accessible education must be part of a comprehensive care model, not an afterthought.
In the past, a boy born with Duchenne in a village might go undiagnosed, with his condition described simply as “failure to thrive”. Many lived short and difficult lives, often dying in their early teens.
For the young boys attending the workshop, the future is considerably brighter, reflecting the progress that continued investment in care, awareness and inclusion can achieve.
The workshop was supported by the Expedition Mt Kinabalu, Coalition Duchenne’s annual charity climb. Now in its 14th year, the expedition has raised more than RM100,000 for Sabah Women and Children’s Hospital to fund equipment, care resources and initiatives such as this workshop.
“It is my hope that boys with Duchenne in Sabah will have access to the same level of care available in other parts of the world,” said Catherine Jayasuriya, founder and executive director of Coalition Duchenne and a Kota Kinabalu native.
“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 they are not alone.”
Duchenne muscular dystrophy is a rare, fatal genetic disorder that causes progressive muscle weakness from early childhood and primarily affects boys.
Some of the families at the workshop.
