Michelle Manzo, MPH, CMPP, discusses epilepsy challenges in motherhood

In this Contemporary OB/GYN video, Michelle Manzo, MPH, CMPP, an epilepsy medical affairs outcomes researcher at UCB and a patient advocate, discusses the multifaceted challenges faced by women with epilepsy throughout their motherhood journey and outlines opportunities to improve care and outcomes.

Manzo explains that women of childbearing age with epilepsy often struggle with complex medication management, as they must balance seizure control with contraception, pregnancy safety, and postpartum considerations. This complexity is compounded by significant barriers to information.

Guidance is frequently inconsistent, conflicting, or difficult to access, particularly because women interact with multiple health care professionals—such as neurologists, obstetricians, and maternal-fetal medicine specialists—who may not always provide aligned recommendations. Stigma, fear of self-advocacy, and a lack of agency further contribute to stress, prompting many women to seek information and reassurance from peer communities.

Sleep deprivation and stress, which are inherent to pregnancy and parenthood, are highlighted as particularly important seizure triggers. Manzo emphasizes that discussions around sleep hygiene and stress management should begin well before pregnancy, rather than after challenges arise.

To better understand these experiences, Manzo describes a recent social media listening study published in Epilepsy & Behavior. The study analyzed nearly 250,000 posts from more than 6 countries and identified 4 recurring themes: heightened uncertainty and fear surrounding treatment changes before, during, and after pregnancy; inconsistent communication and limited access to anti-seizure medication safety information; anxiety about balancing seizure control with fetal and newborn safety; and perceived barriers to safe pregnancy, delivery, and parenthood, including breastfeeding.

Many women reported that information was not necessarily absent but was difficult to interpret or contradictory, leading to confusion and increased anxiety. Notably, there was limited discussion about long-term child neurodevelopmental outcomes, signaling a need for broader education beyond congenital malformations.

Manzo outlines 4 key opportunities for change: improved multidisciplinary collaboration with earlier planning; education in plain, stage-appropriate language for patients, families, and health care professionals; enhanced peer support and advocacy through moderated forums; and ongoing provider education on epilepsy management across the reproductive lifespan. She also underscores the importance of individualized treatment plans, early safety planning in the home, informed breastfeeding discussions, and transparent sharing of medication safety data.

In closing, Manzo highlights the unbranded resource wocbawithepilepsy.com, which offers educational materials, decision-support tools, and shared decision-making resources designed to empower both patients and clinicians and support more confident, informed motherhood journeys for women with epilepsy.

No relevant disclosures.

Reference

Baker GA, Bourikas D, Manzo AM, et al. Experiences of women of childbearing age with epilepsy throughout their motherhood journey: Results from a social media listening study. Epilepsy & Behavior. 2025;174. doi:10.1016/j.yebeh.2025.110799