Navigating the unique challenges of epilepsy in women's health
It’s no secret that while women generally live longer than men, they face a disproportionately higher burden of healthcare challenges throughout their lives.[1] The lack of funding and research in women’s health has meant women are consistently misunderstood, and misdiagnosed. Sadly, this problem permeates across health and disease.
As the chief medical officer at Angelini Pharma, it’s my personal interest to tackle the intersection of women’s health and epilepsy, since they make up nearly half of the 50 million people affected worldwide.[2]
Like so many other conditions, epilepsy affects women differently than men, owing to the complexity of brain health and the historical (and persisting) lack of investment in women’s health. These factors create unique challenges for women living with epilepsy. While it’s impossible to tackle the root causes of the greater inequality in gendered health care overnight, we must ensure we are platforming discussions that aim to address these inequalities. Only then can we begin to create meaningful change in how we approach epilepsy in women and hopefully draw parallels to enhance our understanding of women’s health.
The intersectionality of women’s health and epilepsy
Historically, global healthcare systems have been developed by and for men, resulting in systemic inequality in women’s health research and funding. Women were only recently included in global clinical trials during the 1990s, and funding for women’s health conditions remains disproportionately low.[3]
Living with epilepsy as a woman means navigating complex challenges that are often omitted or dismissed by healthcare systems or societal structures. For example, hormonal fluctuations can drastically impact the symptoms of epilepsy, with many women experiencing changes in seizure frequency during their menstrual cycles, a condition known as Catamenial epilepsy. It’s estimated that 10%-70% of women experience Catamenial epilepsy, but the wide range of this estimate suggests the symptoms are poorly defined.[4]
Epilepsy has an unequal impact on women when it comes to reproductive health, as contraceptive medicines have a considerable impact on women’s ability to manage their epilepsy. Some antiepileptic drugs (AEDs) can interfere with hormonal contraceptives, reducing their effectiveness and potentially leading to unplanned pregnancies. Certain AEDs can also impact fertility, potentially forcing women into making a difficult decision between treatment adherence and the desire to conceive.
While many women continue to navigate these obstacles, there remains a significant lack of awareness regarding the specific challenges faced by women with epilepsy. More needs to be done. On a practical scale, creating comprehensive care plans, educating healthcare providers about the unique needs of women with epilepsy, and improving access to personalised reproductive health strategies, could enhance both seizure control and women’s reproductive health.
Beyond women’s reproductive health, there is a lack of awareness and research on the impact that more commonplace healthcare conditions, such as mental health, have – specifically on women. Studies have shown that women with epilepsy are more likely to experience mental health comorbidities such as depression and anxiety when compared to men, with women being twice as likely as men to suffer from depression.[5],[6] Moreover, by applying artificial intelligence and machine learning, we recently investigated the potential link between epilepsy and depression and documented that women with epilepsy seem to be more at risk of mood comorbidities than males. Given that epilepsy affects approximately six million people in Europe and nearly 400,000 new diagnoses each year, the need for integrated mental health support becomes even more pressing.
The societal impact of epilepsy often exacerbates these issues
Looking beyond physical health, the intersection between being a woman and living with epilepsy also compounds existing societal challenges, given that it is not just a matter of gender inequality, but also a public health issue.
Cultural barriers, including shame and discomfort around topics such as menstruation and contraception, hinder discussions and awareness, contributing to a lack of awareness of the issues mentioned earlier. Censorship and misinformation on social media further exacerbate these issues, limiting effective communication and understanding.
In the workplace, globally, the employment rate for people living with epilepsy is ~42%, with women experiencing disproportionately higher unemployment rates, despite attaining higher levels of education.[7] Research from the Trade Union Congress indicates that individuals with epilepsy earn approximately 11% less than able-bodied employees. In an Epilepsy Action survey, 60% of respondents reported workplace discrimination, and 42% of employers admitting reluctance to hire those with epilepsy.8
The situation remains challenging and, while change is happening, that change is slow and often inconsistent. Addressing these issues requires urgent legislative action and workplace reform, as stigma and misconceptions can create barriers to career opportunities and job performance.
Pharma’s responsibility and the need for advocacy
Pharma plays a critical role in holding responsibility for developing effective treatments that are inclusive and ensuring that they aren’t provided in a vacuum. It is crucial to advocate for policy changes, increase funding, and conduct inclusive clinical trials. More funding needs to be dedicated to understanding the impact of epilepsy in women. Only by investing in research, can we provide the support needed for them to achieve seizure freedom. To make a meaningful impact, we must join a larger movement for change by increasing female representation in leadership across healthcare, government, and research.
References
[1] Taylor, L. (2024). Women live longer than men but have more illness throughout life, global study finds. BMJ.
[2] World Health Organisation. (2024). Epilepsy. Retrieved from World Health Organisation.
[3] Katherine A Liu, N. A. (2016). Women’s involvement in clinical trials: historical perspective and future implications. National Library of Medicine.
[4] Foundation, E. (2016). Basics about Catamenial Epilepsy. Retrieved from Epilepsy Foundation.
[5] Malini Gopinath, P.S. Sarma, Sanjeev V. Thomas. (2011). Gender-specific psychosocial outcome for women with epilepsy. Epilepsy & Behaviour.
[6] Mclean.(2025). Women’s Mental Health: The Gaps, the Truth, and the Way Forward.
[7] Epilepsy Action. (2024). Employment Rights Bill overlooks disability employment challenges.
About the author
Dr Agnese Cattaneo has been chief medical officer of Angelini Pharma for over eight years, overseeing a variety of initiatives for engaging with the clinical community and wider healthcare ecosystem across numerous disease areas. Subsequent to medical and doctoral training, including the publication of peer-reviewed research in pioneering journals such as the European Journal of Endocrinology and Clinical Endocrinology (Oxford), Dr Cattaneo held senior medical affairs positions at a number of companies, including Ipsen, Novartis, and AstraZeneca.
