In Uganda, a little-known but deadly condition is stealing childhoods, one weakening muscle at a time. Duchenne Muscular Dystrophy (DMD), a rare genetic disorder that leads to progressive muscle degeneration and premature death, remains misunderstood, underdiagnosed, and largely unspoken about in the country.
Families affected by it bear an invisible burden—one of emotional strain, misdiagnosis, and financial hardship.
Among the voices breaking the silence is Dr Birungi Deusdedit, a physician at CoRSU Hospital and a patient with DMD.
His personal journey of delayed diagnosis, physical decline, and unwavering determination to practise medicine paints a stark picture of a health system unequipped for rare disorders—and a society still unaware of their existence.
“Living with Duchenne Muscular Dystrophy has been a journey of resilience and hope,” he says. “When I was misdiagnosed as a child, I didn’t understand what I was facing, but my determination to overcome it has never wavered.”
Symptoms began manifesting when Dr Birungi was five. Weakness in the legs, trouble climbing stairs, and an inability to keep up with peers were early signs.
But in a country where DMD is rarely recognised, his symptoms were mistaken for polio—a diagnosis he carried for over a decade.
It was only at 18, after years of unanswered questions, that Nsambya Hospital identified the real cause: Duchenne.
Duchenne Muscular Dystrophy affects mainly boys and is caused by mutations in the gene responsible for producing dystrophin, a vital protein that protects muscles.
Without it, muscles gradually break down. Children with Duchenne often lose their ability to walk by age 12 and face fatal respiratory or cardiac complications between 18 and 25.
While exceptional cases survive into their sixties, the prognosis is grim—and the journey, often lonely.
“Awareness is the first step toward change,” says Dr Birungi.
“Families need to know that early diagnosis and proper management can significantly improve the quality of life for children with DMD.”
In Uganda, that awareness is sorely lacking. For many families, a diagnosis—if it comes at all—arrives too late. And when it does, access to care is limited.
Treatment involves regular physiotherapy, respiratory support, orthopaedic equipment, and in some cases, costly medications that are out of reach for most Ugandan households.
“Access to affordable care and assistive devices is crucial. Without them, many patients are left to face this disease alone, losing mobility and hope prematurely,” Dr Birungi notes.
At CoRSU Hospital in Entebbe, one of the few places in the country with a dedicated ward for Duchenne patients, efforts are underway to provide multidisciplinary support.
Physiotherapy, counselling, and nutritional guidance are part of the model. But for families in rural and remote areas, distance, transport costs, and stigma form insurmountable barriers.
“There’s still so much stigma and misinformation,” says Dr Birungi.
“People don’t understand why a child suddenly starts falling, or why their muscles waste away. Sometimes families think it's witchcraft or a curse. That’s why education matters.”
Globally, research into DMD is advancing. Gene therapies, exon-skipping treatments, and clinical trials offer a glimmer of hope, but none offer a cure—not yet.
And for Uganda’s patients, these global breakthroughs remain out of reach without local policy interventions.
“We need more effort toward awareness and affordable treatment options,” Dr Birungi urges.
“Many children are left to face this disease alone because they lack access to the necessary support.”
What he envisions is not simply better treatment, but a national strategy: training health workers to recognise early symptoms, funding for essential equipment, support for caregivers, and inclusion of rare diseases in Uganda’s health planning.
In the meantime, families across the country continue to quietly fight a devastating condition most Ugandans have never heard of.
And unless awareness grows and action follows, the silent struggle of Duchenne patients will remain buried under the weight of neglect.