By Kabuye Ronald
Children and youth living with Spina Bifida and Hydrocephalus (SBH) are decrying the stigma and discrimination they face, not only from the general public but also from the very service providers they rely on for healthcare, education, and employment.
This concern was raised during a press conference held at the headquarters of the Spina Bifida and Hydrocephalus Association Uganda (SHAU) in Lubaga Division, Kampala. The event was organized in the lead-up to the annual World Spina Bifida and Hydrocephalus Day, which will be commemorated on October 25, 2025, under the theme: “Accelerating Action for Spina Bifida and Hydrocephalus.”
Spina Bifida is a congenital condition where the spine and spinal cord do not develop properly, often leading to physical disabilities. Hydrocephalus is caused by an abnormal buildup of cerebrospinal fluid in the brain, increasing pressure and potentially leading to brain damage if not treated.
These conditions require specialized medical care available only at a few hospitals in Uganda, including Mulago National Referral Hospital, Cure Children’s Hospital in Mbale, and Mbarara Regional Referral Hospital. Shockingly, there are only 12 surgeons in Uganda trained to handle SBH-related surgeries.
Nakanyiga Catherine, Chairperson of the National Youth Advisory Committee – SHAU, who was born with Spina Bifida and holds a Master’s in Clinical Psychology, highlighted stigma as the biggest challenge faced by youth with SBH. This stigma, she noted, exists in schools, public service centers, workplaces, and even within families.
“Stigma has forced many of our colleagues to drop out of school or be denied job opportunities. At health facilities, when providers realize someone has SBH, they simply refer them to Mulago or Cure Hospital in Mbale — even for common illnesses like malaria or typhoid that can be treated anywhere,” she said.
Nakanyiga also decried the domestic abuse and neglect faced by children with SBH, revealing that some parents hide their children away, lock them indoors, and deny them access to education and medical care, largely due to ignorance and shame.
She urged the public to embrace inclusivity, emphasizing that SBH is not contagious and individuals with the conditions deserve social interaction, care, and opportunities like everyone else. She shared a personal experience where she was denied a job despite excelling in a virtual interview simply because the employer found out she had a disability.
“They claimed they didn’t have facilities to accommodate me and offered a lower pay just because of my condition,” she added.
Benjamin Fortunate Kawuma, 29, who lives with Hydrocephalus, shared his journey of early diagnosis and treatment, which allowed him to live a fulfilling life. He called for the dispelling of harmful myths and superstitions around SBH.
“These are medical conditions, not a result of witchcraft. We need support to access both medical and social services, not pity or judgment,” he stated.
Kawuma also highlighted the major issue of infrastructure inaccessibility especially for those who use wheelchairs or crutches.
“We are cut off from essential services because many places like banks, hospitals, schools, government offices are not wheelchair and crutches accessible. Even public transporters often refuse to take us,” he said.
“But if we work together, we can break down these barriers. We have a life to live just like everyone else.”
Asiimwe Miracle, a finalist at Makerere University pursuing a Bachelor’s degree in Social Work and the Assistant Administrator at SHAU, stressed the need for inclusivity in schools.
She explained that students with Spina Bifida often struggle with incontinence and need to perform self-catheterization. However, most schools do not provide the necessary private spaces for this, leading to discomfort and shame.
“If schools can provide private rooms for catheterization, accessible toilets, and classrooms, students with SBH will feel more comfortable and stay in school,” she said.
Asiimwe also emphasized the importance of prevention.
“Prevention is cheaper than treatment. Taking folic acid before and during pregnancy greatly reduces the risk of Spina Bifida. Folic acid is found in fruits, vegetables, and supplements, it’s affordable and accessible,” she explained.
Ssebagala Ruben Emmanuel, a Senior Five student living with Hydrocephalus, narrated the discrimination he faces at school.
“Some teachers don’t understand my condition. I once missed a lesson due to a pressure sore and was reprimanded harshly. Despite explaining, the teacher continued to torment me,” he shared.
He urged the Ministry of Education to train teachers on SBH and other disabilities to create a more understanding and inclusive learning environment.
“Teachers use our conditions to label and mock us saying things like ‘that child in the wheelchair’ or ‘the one who leaks urine.’ This only pushes students to drop out,” he lamented.
The youth living with Spina Bifida and Hydrocephalus are calling on government institutions, healthcare providers, educators, employers, and the wider public to break the cycle of stigma and embrace inclusion.
As Uganda prepares to mark World Spina Bifida and Hydrocephalus Day on October 25, their plea is simple: “Treat us with dignity we deserve equal opportunities and a chance to thrive.”
