What is different for women living with epilepsy?

From a young age and especially at the point of puberty, women are faced with societal and physiological experiences and decisions that are different from our male counterparts – such as planning for (or avoiding) pregnancy, the pregnancy months, lactation, post-partum and decades later, menopause. These differences are further complicated for a woman diagnosed with epilepsy. She has a different experience living with her disease than a man does. 

Women need to consider their epilepsy treatments while preparing for the health of their unborn. They may be persuaded to undergo a C-section, and they may experience anxiety and fatigue after birth that can impact the frequency of seizures. Safety questions about breastfeeding may arise, along with so many other questions that a woman living with epilepsy must consider. Adding to these countless worries is the stress of finding accurate and relevant information during these pivotal and deeply personal moments.  

The simple, but complex question of why is epilepsy different for women was the focus of a recent International Bureau for Epilepsy (IBE) event entitled ‘Women & Epilepsy’, in which I had the privilege of participating. As part of a project by IBE to empower women with epilepsy, experts from various fields were joined by women with the disease to share and discuss their lived experience of epilepsy. They shared clinical and social perspectives on how epilepsy has a unique and significant impact on women, especially once they reach childbearing age.

Neurologists, psychologists, researchers, human rights experts, industry colleagues and, most importantly, women living with epilepsy, who are experienced experts in their disease, underscored:

• The clinical and ethical imperative to generate more and better standardized data to inform shared decision making on the use of medication during pregnancy and breastfeeding.
• The need for intersectional solutions that go beyond medicines and include policy interventions and psycho-social support.
• The importance of collaboration across the medical, academic, advocacy, and private sector communities to drive patient-centered change.
• The need for a case team to enable effective communication between a woman’s neurologist or epileptologist team and gynecology team throughout pregnancy and maternity.
• The lived experiences of women living with epilepsy must be foundational to any action taken.

UCB is working to advance science for women of childbearing age with chronic diseases and to empower them to make shared decisions about their healthcare. Our effort in addressing knowledge gaps in the care of women of childbearing age began in rheumatology, and we are now embedding an emphasis on women of childbearing age across our current and potential future medicines. 

My UCB colleagues and I are seeking to better understand and apply insights shared by people living with epilepsy and rare syndromes to bring meaningful change to their lives. In 2020, we conducted a social listening project that tracked more than 200,000 public social media posts, across six countries in the European Union and United States, over the course of a year. This listening initiative explored two key questions:

• What is the motherhood journey experience of women living with epilepsy?
• What are the unmet needs of women living with epilepsy? 

Based on the gathered insights, we convened a multidisciplinary community of patients, patient group representatives, and physicians from different therapeutic areas. 

By convening this community of experts, along with partnerships with clinical teams, UCB strives to address knowledge gaps in the care of women of childbearing age through the provision of validated evidence and quality disease management tools. 

It is fearless listening, continued collaboration, and a bias for action that will bring a paradigm shift toward protecting women through research — and not from research. Furthermore, this research is just one component in meeting the unique physical, emotional, and social needs of women of childbearing age living with epilepsy.  

Mothers, daughters, sisters – all women – should feel confident to request the information they need to make shared decisions about their treatment options before, during and after pregnancy. At UCB, we are working toward a future where this is possible.