Epilepsy & Women
Why Accounting for Sex & Gender Is Essential for Better Neurological Care.
Epilepsy is a serious neurologic disorder characterized by recurring and unprovoked seizures and affects people of all ages. The “2021 Global Burden of Disease Study” published in Lancet Public Health estimates that there are 51.7 million people living with epilepsy globally, equivalent to 0.7% of the population.
While there are roughly equal numbers of men and women with epilepsy, there are important sex and gender differences between men’s and women’s experiences of this condition.
Dr. Esther Bui, associate professor of Medicine in Neurology at the University of Toronto and clinician educator at University Health Network’s Krembil Brain Institute, explained that for women, epilepsy frequently intersects with biological transitions (e.g., puberty, menstrual cycling, pregnancy, postpartum, menopause) and gendered realities (e.g., caregiving roles, stigma, access to specialty care) in ways that can shape diagnosis, treatment choices, and health outcomes.
THE RESEARCH PROBLEM HIDING IN PLAIN SIGHT
For decades, biomedical research treated males, whether animal models or human participants, as the default. Even when studies included females, they often failed to analyze outcomes by sex, missing clinically useful insights.
Gabriella Mamlouk and colleagues analyzed neuroscience research published in six leading journals over the course of a year and found persistent sex bias and sex omission, including studies that did not report sex at all.
Published in Frontiers in Neuroendocrinology in 2020, some studies that included men and women did not treat sex as a meaningful variable in analyses. A separate review of neuroscience and psychiatry papers by Rebecca Rechlin and colleagues compared studies from 2009 with those in 2019.
The 2022 article in Nature Communications showed that over the decade, there were increasingly more studies that included male and female participants. However, there continued to be missed opportunities to detect sex differences because of study designs and analytic choices, leaving clinicians and patients to make high-stakes decisions – for instance about contraception, pregnancy, or medication risk – with a weak evidence base.
Mining and re-analyzing previously collected data is one way that researchers are addressing gaps in our knowledge base of women’s neurology. For instance, Dr. Bui’s team in Toronto is currently exploring all FDA-approved drugs for neurology, including epilepsy, and looking at what proportion of previous studies have factored in sex- or gender-analyses.
“In most research, whether you are male or female, was collected when someone was enrolled, even if a sex-separated analysis was not conducted,”said Dr. Bui.
We are retrospectively looking at data and addressing gaps where sex and gender information was collected but not employed.
With more data-sharing between researchers than ever before, better questions, and more powerful technology tools, Dr. Bui is confident that we are moving in the right direction toward a more fulsome view of neurological conditions.
EPILEPSY ACROSS THE LIFESPAN: WHY SEX-SPECIFIC CARE IS CRITICAL
For women, epilepsy management becomes more complex starting in adolescence because treatment decisions intersect with reproductive health. At any given time, a woman is in an important reproductive stage in their life, whether she is menstruating, thinking about whether to get pregnant, entering perimenopause, or in menopause, said Dr. Bui, who recommended that reproductive stage and reproductive history be discussed at every medical visit to inform care.
For instance, seizure frequency can change across phases of the menstrual cycle (known as catamenial epilepsy). Antiseizure medications can lead to irregular periods or interact with hormonal contraception and fertility therapies. Having open communication about reproductive health can help to fine-tune epilepsy management and stabilize the disease.
The reproductive stage that takes most of the attention in women’s epilepsy research and clinical care is pregnancy. “Unlike many other neurological conditions, for women with epilepsy, it often is not possible to stop taking medication during pregnancy,” shared Dr. Bui.
The best time to improve pregnancy outcomes for a woman with epilepsy is before conception.
Many drugs that treat epileptic seizures are known to be teratogenic – this means that with exposure and during pregnancy, babies have an increased risk of having a major malformation like cleft palates and heart defects, and higher risk of intellectual disability and learning disabilities.
But, to have a healthy baby, you must have a healthy mom with a stable disease. And so, shared decision-making between patients, generalists, and specialists is an important part of preconception planning as well as epilepsy management during pregnancy.
TRAINING GAPS ARE REAL, & WOMEN’S NEUROLOGY IS ONE RESPONSE
Women’s neurology is emerging as a subspecialty, yet training gaps persist. The literature highlights that many neurologists and trainees report limited preparation in women-specific neurological issues.
A survey-based snapshot of neurology education by Dr. Sara LaHue and colleagues published in Neurology in 2023 showed that only 44% of U.S. neurology residency program directors felt their trainees were sufficiently prepared to care for neurological conditions in pregnancy, a striking figure given how often neurology and reproduction overlap in real life.
In a 2024 commentary published in Canadian Journal of Neurological Sciences, Drs. Mimma Anello, Aleksandra Pikula and Bui assert that specialized training in women’s neurology is critical to raise awareness of sex- and gender-specific considerations and improve care for women across the life course.
“There’s a huge hunger and need in our training programs for sex- and gender-informed neurology,” shared Dr. Bui, and epilepsy is one of the conditions where knowledge gaps can have direct consequences.
Some of the barriers for training medical residents in this type of precision medicine for women include having clinical opportunities, in-class time to learn about epilepsy and other neurological conditions, and a lack of education materials.
As a response to these barriers, in 2025, Dr. Bui founded the Integrating Neurological Sex and Gender Issues in Global Health Training (INSIGHT) network, a collaborative group of educators and experts who are leveraging technology and creating much-needed educational resources like training modules and webinars within an electronic “living library” that can be accessed for free to bridge sex-and-gender gaps in medical education.
Dr. Bui’s eye is on the future: “We are in an exciting time where changes are happening that cater to what women need and want. We might be too late for today, but we are early for tomorrow. We are changing medicine not just for ourselves but for our daughters and their daughters.”
Source: Mind Over Matter 22