When Aidah Nalweyiso was 11 years old, she began noticing small but troubling changes in her body. Her legs felt heavy, she stumbled more often and simple tasks that once came easily suddenly became a challenge. Doctors at the time could not provide clear answers. It was only many years later, when her young son began showing the same symptoms, that the truth emerged: both mother and child were living with Becker muscular dystrophy (BMD).
For families in Uganda, the diagnosis of BMD can feel like stepping into the unknown. The condition, a rare genetic disorder that weakens the muscles, slowly strips children of their ability to stand, walk, and live independently. Aidah's young son, now hopes to spend the rest of his life in a wheelchair.
The journey to diagnosis was anything but easy. Genetic testing, which can cost over Shs1.2 million, is far beyond the reach of many Ugandan families. Even when the disease is recognized, options for treatment and therapy are limited. Physiotherapy, steroids, and supportive care can help slow progression, but they remain scarce and often unaffordable.
In Uganda, the full scale of BMD is still largely hidden. A recent clinic at CoRSU Rehabilitation Hospital tested 57 children for muscular dystrophy and found that 40 were positive for BMD. Health workers believe many more cases remain undiagnosed across the country, with boys most severely affected and mothers often serving as silent carriers.
Despite the challenges, families like Aidah's refuse to give up. ChildCare Foundation, a support group, has stepped in to raise awareness and provide mobility aids. Yet the financial and emotional strain is immense, and parents are often left feeling helpless as they watch their children’s health decline.
Doctors emphasize that early recognition is critical. Signs such as delayed walking, frequent falls, and difficulty climbing stairs can be the first red flags. With timely intervention, therapy, and care, children can retain mobility for longer and enjoy a better quality of life.
For Aidah, the fight is deeply personal. She carries the weight of her own condition while caring for her son, each day a reminder of the persistence it takes to face Becker muscular dystrophy. Her story is not just about illness, it is about courage, love, and the hope that with greater awareness, no Ugandan family will have to face this battle alone.
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