Principal Investigator: Richard Lako, Ministry of Health, Government of South Sudan & Jane Carter, Amref Health Africa
The study will evaluate a community-based programme to protect children from developing epilepsy and improve the treatment and care of persons with epilepsy in onchocerciasis (‘river blindness’) endemic regions in South Sudan
The research should fill a significant evidence gap concerning the management of people with epilepsy in remote and conflict affected settings, a highly neglected and stigmatised condition in lower income settings. The study will also improve knowledge of community-based intervention methods which can apply to other remote or humanitarian contexts. Finally, the study will increase knowledge concerning the association between onchocerciasis-related epilepsy and nodding syndrome.
Nodding syndrome is another mystery for the people of South Sudan, the aetiology remains unknown, the magnitude of the problem and the treatment protocol are yet to be established and developed respectively but on other hand the relatives of the affected children cannot afford waiting for psychosocial support.
This study will provide the evidence needed to halt the epidemic of epilepsy that is causing such misery to the people of South Sudan as well as affecting the economic growth of the country
With this project we will identify new strategies to sustainably improve the prevention and management of epilepsy in onchocerciasis endemic regions.
The current community directed approach to annual mass distribution of ivermectin will be changed to 6 monthly distribution and vector control, in one of the 3 study sites. The impact will be measured over the life of the project in terms of transmission of onchocerciasis and its effect on the incidence of nodding syndrome and epilepsy. Parallel studies will use the same community structures to identify and manage the many cases of epilepsy, and the impact on persons with epilepsy and their families, as well as school attendance.
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