By ALEX PITHUA

Spina Bifida and Hydrocephalus Association Uganda [SHAU] have held a one-day sensitization and awareness creation with various stakeholders in Nebbi district, an effort to build their capacity in creating awareness on disabilities inclusion in community with major focus on Spina Bifida ["Anguru mi Pyer"] and Hydrocephalus ["Pii mapong iwi dhanu"].

Among the stakeholders who were for this sensitization meeting included political leaders, representatives of PWDs, Medics, VHTs, Media and technocrats.

The project is being implemented for five years in Uganda under Collective Action for Disabilities (CADiR) Project in collaboration with consortium partners NUDIP-Uganda, Mental Health Uganda funded by Norway through RHF, Norwegian Association of Spina Bifida and Hydrocephalus.

Justin Kamakune facilitating stakeholders in Gaf Appartment Nebbi Municipality on Wenesday. By Alex Pithua

The project is spanning selected districts in Central, Western, Western and Northern Uganda including Nebbi, Gulu city, Lira Mbale among others.

Hydrocephalus is a condition where cerebrospinal fluid (CSF) builds up in the brain, increasing pressure within the skull. This excess fluid can damage brain tissue if left untreated. Symptoms vary with age but can include headaches, vision problems, and developmental delays. Treatment often involves surgery to relieve the pressure.

Speaking during this stakeholders’ engagement in Gaf Apartments in Nebbi Municipality on Wednesday 8th October 2025, Justin Kamakune, rallied these stakeholders to spread a positive message about disabilities inclusion especially about Spina Bifida and Hydrocephalus individuals.

Kamakune Observed that it's responsibility of everybody to advocate for the rights of persons with disabilities [Spina Bifida and Hydrocephalus].

She commended the community of Nyaravur/Angala town council for quickly identifying a baby born with Spina Bifida condition last week and contacting SHAU, who intervened and evacuated the baby to cure in Mbale children's hospital.

She appealed for increased decision making in households and councils for self-advocacy and announced a health camp for disabled persons which will be conducted on 20th October 2025 at Nebbi general hospital.

Nebbi district stakeholders photo after spina Bafida sensitization on Wednesday. Photo by Alex Pithua

“Under this arrangement the consortium will do assessment on the disability condition of persons.” Kamakume underscored

Currently SHAU is supporting 1500 families and 8000 beneficiaries with Spina Bifida and Hydrocephalus conditions according to Kamakune.

Judith Acan Okech, a staff of AVSI, attached to Gulu regional referral Hospital, revealed that AVSI, is supporting and doing hygiene teaching for person living with Spina Bifida and Hydrocephalus, referral to cure in Mbale children's hospital, post-operative care, training of parents and caregivers with clean intermittent Cathetarization (CIC) and bowl wash out, rehabilitation, Home visit, counseling and giving assistive devices assessment and transport facilitation to cure Mbale children's hospital and back home.

She also recommended that if a mother conceives she can scan to know the condition of the baby in the womb to encourage early identification of conditions that may lead to Spina Bifida and Hydrocephalus.

According to Acan out 1000 new born babies at least one is born with Hydrocephalus and Spina Bifida condition revealing that at least AVSI receives 4 children born with Spina Bifida and Hydrocephalus condition from St Mary's hospital Labor, Gulu regional referral Hospital and other health facilities.

Judith Acan Okech explain to stakeholders how to manage spina Bafida and hydrosephelus. Photo Alex Pithua

She said at least 640 surgeries are done every 6 years on Hydrocephalus adding that 300 surgeries are done every six years and 800 children are born with Spina Bifida in Uganda.

According to data from AVSI, which was presented by Acan, 957 conditions of Spina Bifida are recorded in Acholi, Lango and West Nile.

Most children born with Spina Bifida have weak legs. If these children are not helped they can die in two years.

She encouraged mothers to deliver in health facilities and avoid traditional birthday attendants, eat a balanced diet including folic acid, and practice good hygiene.

Surgery by neurosurgeons can help to manage Hydrocephalus and Spina Bifida.

In September 2025 during a separate training for journalists in West Nile, Ruth Nalugya, the executive director Spina Bifida and Hydrocephalus emphasized journalists’ respect for difference and acceptance of Persons with Disabilities as part of human diversity.

Nalugya reiterates the role of media in addressing stigma and promoting disability inclusion, incorporating disability representation on various media formats including TV, Film, News and Online content including challenging stereotypes and Stigma among others.

Jackline Ahimbisibwe, program manager Spina Bifida and Hydrocephalus Association Uganda while training the journalists encouraged careful choice of words to call PDWs.

“Rather call them by their names but not by their disability.” Ahimbisibwe shared with journalists

Spina Bifida and Hydrocephalus Association Uganda, is currently implementing a project in Northern Uganda Acholi sub-region (Gulu and Nebbi district)

Nebbi general hospital administrator, Christopher Ongom requested the consortium NGOs to support in building the capacity of this hospital to handle surgery of Spina Bifida and Hydrocephalus.

A baby born with Spina Bifida in Nyaravur-Angal town council, Nebbi district. Photo by Alex Pithua

Nebbi Municipality chairperson of PWDs, Dereck Amula, pledged to extend sensitization efforts to the grassroots since he has platforms to speak in community gatherings.

Grace Amia, principal community development officer [CDO] Nebbi Municipality, who represented Nebbi district [DCDO} confirmed that Spina Bifida and Hydrocephalus condition has been challenging in the community commending SHAU for identifying Nebbi district under this project.

She appealed to SHAU to train more people to be ambassadors and advocates about Spina Bifida and Hydrocephalus conditions, condemning stigma from the community.

The Mayor of Nebbi Municipality, Geoffrey Ngiriker, observed that before SHAU offering training he lacked information about these conditions in babies, “sometimes the medics couldn't provide convincing information about these neglected conditions of Spina Bifida and Hydrocephalus.”

Ngiriker further implored members to include the messages in churches, community Baraza and at burial ceremony strongly recommending VHTs to be greatest ambassadors for Spina Bifida and Hydrocephalus.

SHAU BACK GROUND

Started as a small parent support group of parents faced with stigma, lack of information, social isolation and misery, evolved into a National Umbrella in 2016. Benefitting over 1500 families across the four regions of the country in Northern, Eastern, Western and Central Uganda.

Alex Pithua is news editor at zoomer Africa your number one grassroot informations