Evening session about "Epilepsy in onchocerciasis endemic regions" before the start of AEC 2019 in Entebbe (Uganda)

On Wednesday 21 August 2019 the Department of Paediatrics and Child Health (College of Health Sciences, Makerere University, Uganda), the Ministry of Health (Uganda) and the Global Health Institute (University of Antwerp, Belgium) are organizing an evening session about 'Epilepsy in ochocherciasis endemic regions'. The session will be held the evening before the start of the 4th African Epilepsy Congress (AEC 2019) held in Entebbe from 22 to 24 August 2019.  

Purpose and objectives

Despite many years of community directed distribution of ivermectin, there is still high Onchocerca volvulus transmission in many African regions. Moreover, in those regions there is a high prevalence of onchocerciasis-associated epilepsy (OAE).  

Current onchocerciasis elimination programs do not include identification and management of OAE in their strategies. The Global Programme to Eliminate Lymphatic Filariasis has adopted successfully a two-pronged approach with the deployment of mass drug administration and a strategy for morbidity management and disability prevention (MMDP).

In this session we intend to discuss the possibility to establish a similar strategy for onchocerciasis elimination programs.

Main conclusions

1. OAE evening session (21/08/2019)

  • There is compelling epidemiological evidence that onchocerciasis causes epilepsy, including nodding syndrome and Nakalanga syndrome
  • The pathophysiological mechanisms of OAE are still poorly understood, but investigations are ongoing (post-mortem studies, CSF assays, immunological investigations, etc.)
  • Optimal onchocerciasis elimination programs are able to reduce the burden of OAE in affected communities
  • Sustainable OAE interventions require collaboration between onchocerciasis and mental health programs

​2. Rest of the conference (22-24/08/2019)

  • Neurocysticercosis and onchocerciasis were presented as two main reasons for the huge epilepsy burden in Africa. Public health measures targeting these diseases (better oro-fecal hygiene, rigorous pig rearing/cooking practices, vaccination, improved onchocerciasis elimination strategies) would curb the epilepsy incidence in the continent
  • Wide treatment gap and limited human capacity still constitute barriers to epilepsy care in Africa. It was agreed that increasing access to the first line anti-epileptic drugs (phenobarbital, carbamazepine, valproate and phenytoin) and training primary healthcare workers in epilepsy management via decentralized clinics should be the way forward
  • The role of telemedicine for epilepsy care (conference calls between local health workers and international experts, home video recording of seizures with mobile phones, communication via social media, etc.) offers promising perspectives
  • Strong emphasis was laid on the psychosocial aspects of epilepsy care in order to overcome stigma and improve the quality of life of persons with epilepsy
  • Local research, collaborations and interventions within the African context were encouraged 
  • National and international stakeholders were called to take the lead in epilepsy care, as echoed in the First Global Report on Epilepsy released by the WHO in June 2019

Practical information & programme

Practical information

  • Date: Wednesday 21 August 2019
  • Time: 5.30 pm 
  • Location: Princess Room at the congress venue, the Imperial Resort Beach Hotel in Entebbe


Chairs: Richard Idro, David W. Oguttu 

  • 5.30 pm        David W Oguttu:  Welcome 
  • 5.35 pm        Richard Idro: Nodding syndrome Uganda: a research update. An Hotterbeekx:  Onchocerciasis-associated epilepsy: a research update
  • 6.05 pm        Tom Lakwo : Onchocerciasis elimination: the challenges
  • 6.20 pm        Panel discussion:  Moderator Joyce Kaducu or Alfred Mubangizi and Robert Colebunders

The aim of the panel discussion is to develop a road map to improve epilepsy  prevention and care in onchocerciasis endemic regions. Panel members: Michel Mandro (DRC), Dan Bhwama (Tanzania), Nolbert Gumisiriza (Uganda) Gassim Abd-Elfarag (South Sudan) Joseph Siewe (Cameroon). Each panel member has 5-10 min to present the current onchocerciasis MMDP situation in his country

  • 7.30 pm      Dinner for the invited guests