Nodding syndrome research, lessons learned from the NSETHIO project

Area of Science:

• Neurology
• Infectious Diseases
• Public Health

Background:

• Nodding syndrome (NS) was previously considered a mysterious neurological disorder.
• A potential link between onchocerciasis and epilepsy was long suspected but not confirmed.
• NS was thought to be confined to specific endemic regions in Uganda, South Sudan, and Tanzania.

Purpose of the Study:

• To identify the cause of Nodding Syndrome (NS).
• To investigate the relationship between onchocerciasis and epilepsy.
• To understand the public health implications of onchocerciasis-associated epilepsy (OAE).

Main Methods:

• Reviewed activities of the NSETHIO research project.
• Analyzed all published research papers on NS and OAE.
• Compared NSETHIO findings with previous research outcomes.

Main Results:

• Nodding syndrome (NS) is a clinical manifestation within the spectrum of onchocerciasis-associated epilepsy (OAE).
• Onchocerciasis-associated epilepsy (OAE) is a significant neglected public health problem in areas with inadequate onchocerciasis control.
• Strengthening onchocerciasis elimination programs can prevent OAE.

Conclusions:

• Overwhelming evidence confirms NS and Nakalanga syndrome as clinical presentations of OAE.
• Accelerated onchocerciasis elimination strategies are crucial for preventing OAE.
• Community-based epilepsy surveillance and treatment programs are urgently needed in high transmission areas of *Onchocerca volvulus*.