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. 2024 Jun;31(6):e16254.
doi: 10.1111/ene.16254. Epub 2024 Mar 1.

Challenges to epilepsy management in Rwandan women living with epilepsy

Dirk E Teuwen  1   2 , Arlène Ndayisenga  3 , Ieme Garrez  1   2 , Fidèle Sebera  1   4   5 , Sylvestre Mutungirehe  4 , Josiane Umwiringirwa  3 , Mustapha Ndiaye  6 , Georgette Umuhoza  3 , Paul A J M Boon  1   2 , Peter Dedeken  1   2   7
Affiliations

Challenges to epilepsy management in Rwandan women living with epilepsy

Dirk E Teuwen et al. Eur J Neurol. 2024 Jun.

Abstract

Background and purpose: In Rwanda, epilepsy prevalence ranges between 29‰ and 49‰. Many women living with epilepsy (WwE) are of childbearing age. Epilepsy characteristics and management, contraception, pregnancy, puerperium and stigma in WwE presenting at the neurology clinic of Ndera, Rwanda, were investigated.

Methods: This prospective cross-sectional study investigated demographics, epilepsy characteristics, treatment, contraception, folic acid use, pregnancy, puerperium and stigma in WwE aged ≥18 years. Subgroups were analysed by status of any pregnancy and time of epilepsy diagnosis relative to pregnancy, with significant differences expected.

Results: During December 2020 and January 2021, a hundred WwE were enrolled (range 18-67 years). Fifty-two women had never been pregnant, 39 women had epilepsy onset before pregnancy and nine were diagnosed after pregnancy. No significant differences in age, marital status or occupation were observed. Contraception was used by 27%, of whom 50% were taking enzyme-inducing anti-epileptic medication. Valproate was used by 46% of WwE of reproductive age. Thirty-nine women with epilepsy onset before pregnancy reported 91 pregnancies, with 14% spontaneous abortions. None used folic acid before conception, and 59% only during pregnancy. Five of 78 newborns were preterm. No offspring had major congenital malformations. Nearly 25% of WwE were not compliant with their anti-epileptic medication schedule during pregnancy or breastfeeding. Internalized stigma was observed in more than 60%. Up to 25% had been discriminated against at school or work.

Conclusion: A comprehensive strategy considering the reproductive health and societal challenges of WwE is needed to drive optimal epilepsy management, reproductive health outcomes and societal inclusion.

Keywords: Rwanda; female health; pregnancy; reproductive health; seizure; stigma; women with epilepsy.

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Conflict of interest statement

PD received consultancy fees from UCB Pharma, Merck, Pfizer and Novartis. DET received consultancy fees from UCB Pharma. PAMJB received speaker and consultancy fees from UCB Pharma, LivaNova and Medtronic, as well as research grants through his institution. IG and FS have received research grants through their respective institutions. Other authors have no competing interests.

Figures

FIGURE 1
FIGURE 1
Diagram of pregnancies, abortion, puerperium and offspring.
See this image and copyright information in PMC

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