The Spina Bifida and Hydrocephalus Association of Uganda (SHAU) held a one-day sensitization and awareness meeting in Nebbi District to strengthen community capacity for disability inclusion, with special focus on Spina Bifida (“Anguru mi Pyer”) and Hydrocephalus (“Pii mapong iwi dhanu”).
The meeting, held on October 8, 2025, at Gaf Apartments in Nebbi Municipality, brought together political leaders, representatives of persons with disabilities (PWDs), health workers, Village Health Teams (VHTs), the media, and local government technocrats.
This engagement is part of the five-year Collective Action for Disabilities (CADiR) Project, implemented by SHAU in partnership with NUDIP-Uganda and Mental Health Uganda, with funding from the Norwegian Association of Spina Bifida and Hydrocephalus (RHF). The project operates in selected districts across Central, Western, and Northern Uganda, including Nebbi, Gulu City, Lira, and Mbale.
Hydrocephalus occurs when cerebrospinal fluid (CSF) accumulates in the brain, increasing pressure within the skull and potentially damaging brain tissue. If untreated, it can cause severe complications. Symptoms vary by age but may include headaches, vision problems, and developmental delays. Treatment often requires surgical intervention to relieve pressure.
Speaking during the meeting, Justin Kamakune of SHAU urged participants to spread positive messages about disability inclusion, particularly for individuals with Spina Bifida and Hydrocephalus. She commended the community of Nyaravur–Angal Town Council in Nebbi for promptly identifying a baby born with Spina Bifida last week and contacting SHAU, which helped transfer the child to CURE Children’s Hospital in Mbale for treatment.
Kamakune emphasized that disability inclusion is a shared responsibility, calling for greater involvement of PWDs in household and community decision-making. She announced that SHAU and partners will hold a health camp for persons with disabilities on October 20, 2025, at Nebbi General Hospital, offering medical assessments and support. SHAU currently supports over 1,500 families and 8,000 individuals living with Spina Bifida and Hydrocephalus across Uganda.
Judith Acan Okech, a staff member with AVSI attached to Gulu Regional Referral Hospital, said AVSI supports people with these conditions through hygiene education, referrals to CURE Hospital in Mbale, post-operative care, training of parents and caregivers in Clean Intermittent Catheterization (CIC) and bowel management, rehabilitation, home visits, counselling, and provision of assistive devices.
Acan urged expectant mothers to undergo prenatal scans for early detection of neural tube defects that can lead to Spina Bifida or Hydrocephalus. She noted that at least one in every 1,000 newborns in Uganda is affected. AVSI receives an average of four new cases monthly from St. Mary’s Hospital Lacor, Gulu Regional Referral Hospital, and other facilities.
She reported that Uganda records approximately 800 new cases annually—640 surgeries for Hydrocephalus and 300 for Spina Bifida every six years—with 957 cases documented across the Acholi, Lango, and West Nile sub-regions. “Most children born with Spina Bifida have weak legs, and if not supported early, many die within two years,” she said, urging mothers to deliver in health facilities, maintain good hygiene, and consume folic acid-rich foods to prevent such conditions.
During a separate training for journalists held in September 2025 in West Nile, Ruth Nalugya, Executive Director of SHAU, underscored the media’s critical role in challenging stigma and promoting inclusion of persons with disabilities across all content platforms. She urged journalists to portray disability as part of human diversity rather than deficiency. Jackline Ahimbisibwe, SHAU’s Program Manager, encouraged the use of respectful language: “Call people by their names, not by their disabilities,” she said.
Christopher Ongom, Administrator of Nebbi General Hospital, appealed to partners for support in building the hospital’s capacity to manage surgeries for Spina Bifida and Hydrocephalus. Dereck Amula, Nebbi Municipality Chairperson for PWDs, pledged to extend awareness campaigns to the grassroots.
Grace Amia, Principal Community Development Officer for Nebbi Municipality, commended SHAU for including Nebbi in the project and called for training of community ambassadors to counter stigma and misinformation. Nebbi Municipality Mayor Geoffrey Ngiriker admitted that before SHAU’s intervention, even medical professionals had limited knowledge about the conditions.
“Sometimes even the medics couldn’t provide convincing information about Spina Bifida and Hydrocephalus,” he said, urging leaders to incorporate awareness messages in churches, community barazas, and burial ceremonies. He also called on VHTs to become key ambassadors for inclusion.
SHAU began as a small support group for parents facing stigma, isolation, and lack of information. It evolved into a national umbrella organization in 2016 and now benefits more than 1,500 families across Northern, Eastern, Western, and Central Uganda.
