Shaping a better future for women living with epilepsy

Vandenbruaene Nathalie — Wed, 03 Jul 2024 13:56:35 +0000

Andrea Wilkinson, Epilepsy & Rare Syndromes Patient Engagement

Vandenbruaene … Wed 03/07/2024 - 15:56

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 ��ֳ�, 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.

��ֳ� 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, ��ֳ� 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 ��ֳ� | ��ֳ�

solutions

213 Likes

Supporting International CDKL5 Day

Andrea_Puletto — Mon, 17 Jun 2024 09:13:13 +0000

Supporting International CDKL5 Day

Nick Francis, Neurology Communication

Andrea_Puletto Mon 17/06/2024 - 11:13

Every June the CDKL5 community comes together to recognize CDKL5 disorder, and promote awareness efforts, research, collaboration, and fundraising.

June 17 is International CDKL5 Day, in memory of Glyn Boltwood, whose life and legacy was directly responsible for the medical and scientific community discovering CDKL5 Disorder in 2004.

CDKL5 deficiency disorder – a Developmental and Epileptic Encephalopathy (DEE) - is a genetic disorder that causes seizures, developmental delay, and severe intellectual disability. Seizures typically begin within a few months after birth and are difficult to control with medications. Most children have 1 to 5 seizures every day. Other symptoms include problems with sleeping, feeding, and teeth grinding. Gastrointestinal symptoms are also common and may include constipation, reflux, and air swallowing.

About 1 in 5 children use a feeding tube. CDKL5 deficiency disorder occurs more often in females than males, and males usually have more severe symptoms. This disorder is caused by a change (pathogenic variant) in the CDKL5 gene that is usually not inherited from either parent (de novo). It is an X-linked dominant disorder. CDKL5 deficiency disorder was once thought to be a variant of Rett syndrome but is now considered a separate disorder.

For more useful resources and information, visit:

https://rarediseases.info.nih.gov/diseases/12173/cdkl5-deficiency-disorder

about ucb

neurology CDKL5 seizures Developmental and Epileptic Encephalopathy

246 Likes