By KT Reporter
The Spina Bifida and Hydrocephalus Association of Uganda (SHAU) has held a one-day sensitization and awareness meeting with various stakeholders in Nebbi District aimed at building community capacity for disability inclusion, with special focus on Spina Bifida (“Anguru mi Pyer”) and Hydrocephalus (“Pii mapong iwi dhanu”).
The meeting, held on Wednesday, 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.
The engagement is part of a five-year Collective Action for Disabilities (CADiR) Project implemented by SHAU in partnership with NUDIP-Uganda, Mental Health Uganda, and funded by Norway through the Norwegian Association of Spina Bifida and Hydrocephalus (RHF). The project covers selected districts in the Central, Western, and Northern regions of Uganda, including Nebbi, Gulu City, Lira, and Mbale.
Hydrocephalus is a condition in which cerebrospinal fluid (CSF) accumulates in the brain, increasing pressure within the skull and potentially damaging brain tissue. If left untreated, it can cause severe complications. Symptoms vary with age but may include headaches, vision problems, and developmental delays. Treatment usually involves surgery to relieve pressure.
Speaking during the meeting, Justin Kamakune of SHAU urged stakeholders 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 intervened and transferred the child for treatment to CURE Children’s Hospital in Mbale.
Kamakune emphasized that it is everyone’s responsibility to advocate for the rights of persons with disabilities and called for increased participation of PWDs in household and community decision-making. She also announced that SHAU and its partners will conduct a health camp for persons with disabilities on October 20, 2025, at Nebbi General Hospital, where medical assessments will be done. Currently, SHAU supports over 1,500 families and 8,000 beneficiaries living with Spina Bifida and Hydrocephalus conditions across Uganda.
Judith Acan Okech, an AVSI staff member attached to Gulu Regional Referral Hospital, highlighted that AVSI supports individuals living 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, counseling, and provision of assistive devices.
She advised expectant mothers to undergo prenatal scans to enable early detection of conditions that may lead to Spina Bifida or Hydrocephalus. According to Acan, out of every 1,000 newborns, at least one is born with either Spina Bifida or Hydrocephalus. AVSI receives an average of four such cases monthly from St. Mary’s Hospital Lacor, Gulu Regional Referral Hospital, and other health facilities.
She revealed that an estimated 640 surgeries are conducted every six years for Hydrocephalus, 300 surgeries for Spina Bifida, and about 800 children are born annually with the conditions in Uganda. Data from AVSI shows that 957 cases have been recorded across the Acholi, Lango, and West Nile sub-regions. “Most children born with Spina Bifida have weak legs, and if not helped 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 held in September 2025 for journalists in West Nile, Ruth Nalugya, the Executive Director of SHAU, emphasized the media’s role in challenging stigma and promoting inclusion of persons with disabilities across all content platforms — including film, television, and online media. She urged journalists to respect diversity and portray disability as part of human difference rather than deficiency. Jackline Ahimbisibwe, SHAU’s Program Manager, encouraged journalists to use respectful language when referring to PWDs: “Call them by their names, not by their disabilities,” she said.
Christopher Ongom, the Administrator of Nebbi General Hospital, appealed to consortium partners to support capacity building for the hospital to handle surgeries related to Spina Bifida and Hydrocephalus. Dereck Amula, the Nebbi Municipality Chairperson for PWDs, pledged to extend awareness campaigns to the grassroots through his community platforms.
Grace Amia, Principal Community Development Officer for Nebbi Municipality, praised SHAU for including Nebbi in the project and called for more training of community ambassadors to counter stigma and misinformation. Nebbi Municipality Mayor Geoffrey Ngiriker admitted that before SHAU’s intervention, he lacked adequate information about these conditions.
“Sometimes even the medics couldn’t provide convincing information about Spina Bifida and Hydrocephalus,” he said, urging leaders to include awareness messages in churches, community baraza, and burial ceremonies. He also called on VHTs to become key ambassadors for the campaign.
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, now benefiting more than 1,500 families across Northern, Eastern, Western, and Central Uganda.
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