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Shaping a better future for women living with epilepsy

Posted by
Andrea Wilkinson, Epilepsy & Rare Syndromes Patient Engagement

Throughout life, women face numerous societal challenges that accompany the physiological changes that manifest into a unique life story. These physiological transformations range from puberty to menopause and beyond.  For many women, the childbearing years are the most profound including contraception, pregnancy, childbirth, and post-pregnancy. Each phase carries opportunities and challenges, and for women living with a chronic disease like epilepsy, this journey can be complex and intimidating.



Lack of information

Women living with epilepsy often navigate the motherhood maze with inadequate information on critical aspects about their anti-seizure medications (ASMs) in birth control discussions, fertility planning, pregnancy, breastfeeding, postpartum and outcomes in the child after in utero exposure to ASMs. This lack of knowledge can cast a shadow of uncertainty over their reproductive journey, forcing too many women to make the difficult choice between managing their epilepsy and planning for a family, with some women deciding against having a family due to the challenges.

We are proactive in empowering women with epilepsy to advocate for themselves in discussions about seizure treatment and family planning. We share plain language summaries of our clinical trials’ results, publish other pregnancy-related research and co-create discussion guides that equip women and healthcare professionals to ask the right questions, at the right time.

Advancing the science

At UCB, we strongly believe in the importance of understanding and addressing the unmet needs of women during their reproductive journey. We are driven by the idea of doing more to support them during these pivotal years.

UCB was among the first companies to address the lack of data and research for women. Our commitment to understanding and addressing the unique challenges that women living with epilepsy face has inspired us to strive to advance the science, specifically targeting their reproductive years.

Our aim is clear: to empower through information that enables women to make informed decisions about their reproductive and post-partum health care and beyond, and to know the potential impact those decisions could have on their child. We conducted a deep dive into our global safety database to assess the risk of our medications to the fetus as well as pharmacokinetic studies of our anti-seizure medications to check plasma and breast milk concentration during and after pregnancy.

Collaborating for change

For many women with epilepsy, the inability to access pertinent information can lead to a feeling of isolation. To combat this, we have turned our focus towards building connections and sharing knowledge. In our quest to bring about meaningful change, we collaborate with strategic partners and stakeholders on various projects, including:

  • ConcepTION, a project funded by the Innovative Medicines Initiative (IMI) aimed at reducing uncertainty about the effects of medication used during pregnancy and breastfeeding.
  • Coalition to Advance Maternal Therapeutics (CAMT), a project spearheaded by the Society for Maternal Fetal Medicine focusing research on pregnancy and lactation.
  • Feedback on the FDA’s pregnancy safety study framework. 
  • BRIDGE (Better Research, Information and Data Generation for Empowerment), a multidisciplinary group dedicated to closing the information gap necessary for women living with chronic diseases to receive optimal care.
  • Collaborating with the International Bureau of Epilepsy’s Women and Epilepsy Working Group to bring more information to women living with epilepsy. 

Through in-depth research, strategic collaborations, and building awareness, UCB is laying the foundation for a future where every woman living with chronic disease feels empowered to make informed decisions about her healthcare.

For more information about epilepsy, visit Epilepsy & Rare Syndromes at UCB | UCB

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