30-31 CONDITION - Seize the narrative

For many of us epilepsy is synonymous with seizures. But for people living with rare, severe and lifelong developmental and epileptic encephalopathies (DEEs), seizures are one part of the challenge. DEEs impact every aspect of life for individuals and their families.

An estimated 169 per 100,000 children are living with DEEs, and while the number of adults affected is unknown, the impact is profound at every age.

The frequent, drug-resistant seizures that typically define DEEs often mask a host of persistent, albeit less visible burdens. These include a spectrum of neurodevelopmental delays, including cognitive, motor and behavioural challenges, as well as an increased risk of premature death.

In practice, this can mean difficulties with communication or being unable to perform daily activities like feeding, washing or using the toilet independently. The result is a continuous disruption to quality of life, not just for those diagnosed but for everyone around them.

Despite advances in medical care, the unmet need in DEEs remains significant. Seizure control is an important aspect of DEE care, but we as an epilepsy community must also look to care holistically for those living with DEEs and their families.

The impact of DEEs is not limited to the individual. DEEs affect the entire family, with ripple effects that touch every corner of their lives, often leading to social isolation due to stigma.

Caregivers experience significant financial and emotional burdens, including increased stress, anxiety, depression and guilt. The relentless demands of caregiving have also been shown to disrupt physical health, daily routines, employment and relationships.

Siblings of those affected may also struggle to understand the situation, sometimes feeling isolated or overlooked, and can be affected emotionally and socially by the full-time caretaker demands placed on the family.

To truly understand the daily realities of DEEs, it is crucial to listen to those who live them. UCB conducted research in collaboration with patient advocacy organisations to capture the real-world experiences of people living with DEE and their caregivers.

A comprehensive internet-based 63-question anonymous survey was developed in consultation with the Dravet syndrome (DS) and Lennox–Gastaut syndrome (LGS) communities and distributed via multiple DEE patient groups. The interim analysis included responses from 490 caregivers, investigating how disruptive symptoms affect communication and activities of daily living, such as feeding, dressing, personal hygiene and toileting.

The initial results have been presented at both the American Epilepsy Society (AES) annual meeting 2024 and International Epilepsy Congress (IEC) 2025, highlighting that:

Nearly half of caregivers reported that high rates of disruptive seizures and/or behaviour led to temporary loss of abilities, directly impacting quality of life
Disruptive behaviour was observed in 217 (44.3%) and 157 (32%) individuals either once or multiple times per day, respectively
Striking, disruptive seizures, sleep or behaviour reportedly led to temporary loss of communication in 60.8% (n=298) of patients and loss of one or more activity of daily living in all individuals
In 8.4% (n=41) of individuals, disruptive symptoms reportedly led to temporary loss of all four activities of daily living (feeding, dressing, personal hygiene, toileting).

True progress in DEE management requires a shift from seizure-centric care to a holistic, patient-focused approach.

Multidisciplinary collaboration is essential. Joined-up care pathways, bringing together diverse experts (e.g. clinicians, therapists, educators and social care professionals), will help create a sustainable framework to support individuals with DEEs and their families.

However, policy change is also critical to ensure these multidisciplinary interventions are both available and accessible to all who need them. Fundamentally, advocacy for policy reform must go hand-in-hand with clinical progress to achieve meaningful, widespread impact.

Carers are uniquely positioned to advocate for comprehensive, patient-centric care.
Their day-to-day insights and lived experiences are invaluable in guiding healthcare professionals towards better, more tailored outcomes.

To effectively raise quality-of-life concerns, it’s important that carers feel confident to move beyond discussing seizures alone and openly share the full spectrum of challenges associated with living with DEEs.

Preparing for appointments by noting these challenges helps clinicians gain a clearer understanding of the individual’s needs and the family’s experience.

Carers should also feel empowered to ask about available support services, including therapy, educational resources and respite care, to ensure their loved ones receive comprehensive support.

Ultimately, to effectively address the full impact of DEEs requires all stakeholders to work together. By joining forces and looking beyond seizures alone, we can better support every aspect of life affected by these disorders.