THE second Duchenne muscular dystrophy family workshop in Kota Kinabalu, Sabah brought together families, medical professionals and educators to strengthen support for those living with the condition.
The workshop, held at the Sabah International Convention Centre, was a collaboration between California-based non-profit Coalition Duchenne and Sabah Women and Children’s Hospital (SWACH).
It was aimed at developing a more comprehensive model of specialised, multidisciplinary care for the genetic disorder.
The event offered expert-led sessions, hands-on physiotherapy conducted by the hospital’s own team and direct access to specialists.
It also served as a community outreach programme for the hospital’s Duchenne multidisciplinary clinic – one of the few programmes of its kind in the region and a model organisers are hoping to grow and be replicated elsewhere, Coalition Duchenne said in a statement.
“Our hope is that every family affected by Duchenne will know that they are never alone,” said SWACH paediatric neurologist Dr Elyssa Majawit, one of only two specialists in the field in Sabah.
“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.
“Events like this allow us to extend that care beyond the clinic walls and reach families who need it most.”
Beyond medical care, organisers emphasised that improving outcomes for boys with Duchenne also required confronting the stigma surrounding the disability, which remains prevalent in many communities.
Families affected by Duchenne face not only the physical toll of the condition, but also social isolation and misunderstandings.
Changing those attitudes and education were just as important to a boy’s quality of life as clinical intervention, organisers said.
Many boys with Duchenne attend schools and learning environments that are not equipped to accommodate their changing physical needs, they said.
Organisers stressed that accessible education must be part of a comprehensive care model rather than an afterthought.
The workshop was made possible with support from Coalition Duchenne’s Expedition Mt Kinabalu and NS Pharma.
Now in its 14th year, the expedition has raised more than RM100,000 for SWACH, funding equipment, care resources and other initiatives.
Coalition Duchenne founder Catherine Jayasuriya had spoken about the expedition on Sabah-based community radio station KupiKupi FM to help raise awareness on Duchenne and the cause across the state.
“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, 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 and make sure families across Sabah know they are not alone.”
Duchenne muscular dystrophy causes progressive muscle weakness from early childhood and primarily affects boys.
Boys with Duchenne often lose the ability to walk by age 10 and face life-threatening cardiac and respiratory complications in their teens and 20s.
There is currently no cure, though emerging treatments offer new hope.
