By Kabuye Ronald
On World Spina Bifida and Hydrocephalus Day, held at Mulago Hospital, advocates urged government bodies, NGOs, and the public to unite in improving the lives of those affected by these conditions. The event, marked by a health camp offering free services, emphasized this year’s theme: “Improving Lives, Celebrating Progress in Spina Bifida and Hydrocephalus Treatment and Rehabilitation in Uganda.”
Pheobe Mutoni, Chairperson of the Spina Bifida and Hydrocephalus Association of Uganda (SHAU), highlighted the urgent need for governmental support, specifically calling for the removal of an 18% tax on diapers. She stressed that this tax exacerbates the financial burdens faced by families of children with these conditions, who already struggle with significant challenges.
Mutoni also urged the government to allocate more resources for specialized treatment and rehabilitation services, and to officially recognize World Spina Bifida and Hydrocephalus Day on the national calendar. This recognition, she argued, would foster awareness, reduce stigma, and promote the rights and opportunities for individuals living with these conditions.
In her remarks, Mutoni encouraged the public to collaborate in building a robust framework for lifelong healthcare access for individuals with Spina Bifida and Hydrocephalus. “Together we can make a profound difference,” she stated, advocating for financial support towards initiatives that enhance the quality of life for those affected.
Statistics reveal that Spina Bifida affects approximately 11.7% of 10 births in Uganda, often accompanied by Hydrocephalus, impacting over 8,000 individuals annually. Mutoni called for a comprehensive survey to establish current statistics, emphasizing the need for a well-coordinated national database to improve care and track health outcomes.
Dr. Peter Senyonga, a neurosurgeon at Mulago Hospital, shared insights into the conditions, explaining that Hydrocephalus is characterized by fluid buildup in the brain, while Spina Bifida results from a defect in spinal column formation. He urged expectant mothers to ensure adequate intake of folic acid, which can help prevent these conditions.
Dr. Peter Senyonga, revealed that at mulago hospital in a week they work on 10 to 12 case of Spinabifida condition and at least four cases of hydrocephalus condition on a daily. He thus urged the public not to abandon their children with such condition since they are treatable and preventable if expectant mothers take enough folic acids nutrients
Dr. Rosemary Byanyima, Executive Director of Mulago Hospital, echoed the call for more resources and modern equipment for orthopedic workshops. She noted improvements in community support and reduced abandonment of children with disabilities, thanks to increased awareness and assistive devices.
Byanyima committed to continuing efforts to provide better services for individuals affected by Spina Bifida and Hydrocephalus, emphasizing the importance of collaboration among all stakeholders in building a future where these individuals can lead dignified and fulfilling lives.
children, people living with Spina Bifida and Hydrocephalus conditions, their care takers and parents gave their testimonies and challenges
