Health officials in northern Uganda are launching a new investigation to test nodding syndrome patients for the parasite that causes river blindness, in a renewed effort to understand the link between the two conditions.
The scientific push comes amid a care crisis, as a recently established center for nodding syndrome patients has been forced to close, resulting in the deaths of at least two of its former patients.
Bosco Komakech, the Kitgum district vector control officer, confirmed that Village Health Teams have identified patients for the testing, which is scheduled to begin next week. At least 500 blood samples will be collected from patients in the endemic sub-counties of Kitgum, Lamwo, and Pader and sent to the Ministry of Health for analysis.
Komakech revealed that this study is critical because patients living with nodding syndrome were not included in previous rounds of testing that had shown no active transmission of the river blindness parasite in the general population.
The new testing aims to strengthen the evidence around the suspected connection between the blackfly-borne parasite, Onchocerca volvulus, and neurological conditions like nodding syndrome and epilepsy. “The purpose of this testing is to find out whether there is still any connection between the blackflies and conditions like river blindness, skin disease, epilepsy, and nodding syndrome,” explained Michael Okech, the nodding syndrome focal person for Kitgum District.
Officials clarified that mass treatment with the drug ivermectin will continue for all residents in October, regardless of the study.
Meanwhile, the human cost of the illness has been underscored by the failure of a key support initiative. The Archbishop John Baptist Odama Care Centre in Kitgum (AJBOCCK), which provided dedicated medical and nutritional care, officially closed in June 2024.
The center’s founder, Rev. Fr. Anthony Nyeko, confirmed the closure was due to a lack of sustained commitment from volunteers after he was transferred to another parish. Since the closure, two of the seven patients who were receiving care at the facility have died.
A local coordinator, Joe Otto, highlighted the devastating impact of the closure, noting that patients had shown significant improvement under institutional care. “You know, the parents are already tired, and economically they are not faring well,” Otto said, emphasizing the need for specialized centers.
Fr. Nyeko is now attempting to raise 10 million Shillings to investigate the condition of patients in the region with the goal of establishing a new care center in Omoro District. However, his fundraising efforts have so far been unsuccessful, as organizations he approached cited the loss of their own USAID funding.
The exact cause of nodding syndrome, which affects more than 500 people in Kitgum District alone, remains unknown. While researchers have linked it to the blackfly-transmitted parasite, other suspected factors include malnutrition and post-traumatic stress disorder from the Lord’s Resistance Army (LRA) conflict.
