West Nile Focus! Journalists Trained on Raising Awareness about Spina Bifida and Hydrocephalus

West Nile Focus! Journalists Trained on Raising Awareness about Spina Bifida and Hydrocephalus

By Mike Rwothomio 

Journalists from various media outlets across the West Nile Subregion underwent training focused on ethical reporting and increasing public awareness of spina bifida and hydrocephalus, two significant congenital neurological conditions.

The comprehensive one-day training, organized by Spina Bifida and Hydrocephalus Association Uganda (SHAU), was held at Gaf Apartment Motel in Nebbi Municipality on September 3, 2025.

SHAU, a pivotal organization in the realm of disability rights and inclusion since its establishment in 2016, is committed to enhancing the quality of life for individuals with spina bifida and hydrocephalus, as well as supporting their caregivers. Headquartered in Kampala, SHAU operates regional offices nationwide. As a non-profit, SHAU leverages lived experiences to empower communities, advocate for policy changes, and promote attitudinal shifts toward inclusivity.

Ruth Nalugya, SHAU’s Executive Director, delivered a virtual presentation via Zoom, urging journalists to report responsibly on these conditions to address the silent burden faced by affected populations.

 “As media, we must report on the challenges faced by individuals with spina bifida and hydrocephalus without using stigmatizing or derogatory language,” Nalugya emphasized.

Jackline Ahimbisibwe, SHAU’s Monitoring and Evaluation Officer, encouraged journalists to prioritize evidence-based reporting that promotes inclusive healthcare, rehabilitation, organizational capacity building, human rights advocacy, and education. 

She highlighted SHAU’s core values in diversity, equity, compassion, integrity and stressed the importance of peer-to-peer support to enhance inclusion in families, schools, and communities.

According to the World Health Organization (WHO), the global incidence of spina bifida and other neural tube defects (NTDs) ranges from 0.1 to 5 per 1,000 live births, influenced by factors such as geographic region and folic acid fortification programs. 

Spina bifida, a common congenital neural tube defect, results from incomplete closure of the neural tube during embryonic development, often leading to motor and sensory impairments. 

Hydrocephalus, characterized by an accumulation of cerebrospinal fluid in the brain, can cause increased intracranial pressure and cognitive challenges if untreated, according to WHO.

Journalists’ Responses

Alex Pithua, a journalist with Radio Paidha, called on colleagues to apply the training to enhance community awareness and sensitization efforts.

Jenny Watango, a Nebbi-based journalist, noted, “This training has significantly expanded our understanding of spina bifida and hydrocephalus, conditions we previously knew little about.”

Edna Piyic, a Vision Group journalist from Nebbi, expressed enthusiasm, stating, “From today, we can educate mothers on preventive measures to reduce the risk of these conditions.”

Hillary Alithum, a journalist from Zombo with Voice of Madi, pledged to uphold ethical reporting standards, expressing satisfaction with the training.

 Spina bifida, a significant congenital disorder, exhibits notable geographic variation in prevalence, ranging from 1 in 100 births in parts of China to 0.4 per 1,000 births in developed countries like the United States.

 It ranks among the most common serious birth defects globally, though it is less prevalent than congenital heart defects. 

The introduction of mandatory folic acid fortification in staple foods has proven to be a critical intervention, substantially reducing the incidence of neural tube defects (NTDs) in countries that have adopted this strategy, highlighting its effectiveness in primary prevention.

CURE International’s Hydrocephalus Research in Uganda: 

A prospective study by CURE International in Uganda examined the etiology and treatment of hydrocephalus, focusing on endoscopic third ventriculostomy (ETV) in 300 children, predominantly under 1 year old. The study found that 60% of cases were caused by cerebrospinal fluid infections, with 76% of these infections occurring in the first month of life. 

According to SHAU, the five-year training program aim to empower journalists to raise awareness about spina bifida and hydrocephalus. 

By fostering community education and advocacy, the organization notes that such efforts shall reduce complications associated with these conditions, leveraging the preventive benefits of interventions like folic acid supplementation to address NTDs on a broader scale.