Review of epilepsy care in the Democratic Republic of the Congo

Tshibambe N. Tshimbombu, Minkyung Shin, Thomas Thesen, Luabeya Mesu’a Kabwa, Karen Blackmon, Jean Marie Kashama wa Kashama, Barbara C. Jobst, Dominique Fontaine, Immanuel Olarinde, Daniel Okitundu-Luwa E-Andjafono

Research output: Contribution to journalReview articlepeer-review

Abstract

Epilepsy imposes a substantial burden on the Democratic Republic of Congo (DRC). These challenges encompass the lack of comprehensive disease surveillance, an unresolved understanding of its pathophysiology, economic barriers limiting access to essential care, the absence of epilepsy surgical capabilities, and deeply ingrained societal stigmas. Notably, the national prevalence of epilepsy remains undetermined, with research primarily concentrating on infectious factors like Onchocerca volvulus, leaving other potential causes underexplored. Most patients lack insurance, incurring out-of-pocket expenses that often lead them to opt for traditional medicine rather than clinical care. Social stigma, perpetuated by common misconceptions, intensifies the social isolation experienced by individuals living with epilepsy. Additionally, surgical interventions are unavailable, and the accessibility of anti-seizure medications and healthcare infrastructure remains inadequate. Effectively tackling these interrelated challenges requires a multifaceted approach, including conducting research into region-specific factors contributing to epilepsy, increasing healthcare funding, subsidizing the costs of treatment, deploying mobile tools for extensive screening, launching awareness campaigns to dispel myths and reduce stigma, and promoting collaborations between traditional healers and medical practitioners to enhance local understanding and epilepsy management. Despite the difficulties, significant progress can be achieved through sustained and compassionate efforts to understand and eliminate the barriers faced by epilepsy patients in the region. This review outlines essential steps for alleviating the epilepsy burden in the DRC. Plain Language summary: There are not enough resources to treat epilepsy in the DRC. PWEs struggle with stigma and the lack of money. Many of them still use traditional medicine for treatment and hold wrong beliefs about epilepsy. That is why there is a need for more resources to make the lives of PWEs better in the DRC.

Original languageEnglish
JournalEpilepsia Open
DOIs
Publication statusAccepted/In press - 2024
Externally publishedYes

Keywords

  • Centre Neuropsychopathologique
  • Democratic Republic of Congo
  • Onchocerca volvulus
  • people with epilepsy
  • sub-Saharan Africa

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