It’s More Than Seizures: Understanding Developmental and Epileptic Encephalopathy Disruptions

It’s 8:45 a.m. on Monday morning. By now Gretchen has usually dropped her son Peter*, off at school with his one-on-one helper, and is on her way to work, but on Friday night, Peter had a seizure which was worse than what he normally experiences and things haven’t been the same since. She has let work know that she needs to take a day of leave while she sorts things out.

Although daily life has always been challenging for them, they’ve somehow learned how to manage. But over the past couple of days, Peter hasn’t been able to dress or feed himself. The disruption in their normal routine has Gretchen rattled. She is trying to stay calm, but she’s anxious. She wonders if these basic skills will come back. Is this a temporary regression or something long-term? Will things get worse? Their normal routine was challenging enough, but they were making it work. How will they cope now?

This type of story is typical of the numerous stories I have heard from families of people living with Developmental and Epileptic Encephalopathies (DEEs).

Today, on Dravet Syndrome Awareness Day, I want to focus on the disruptions to daily life faced by people living with Dravet syndrome (DS) and other DEEs.

When society thinks of epilepsy, they tend to think of seizures. But for people living with rare, severe, and lifelong epileptic syndromes called Developmental and Epileptic Encephalopathies (DEEs), the impact affects every aspect of their lives and their families.

It is estimated that 169 per 100,000 children are living with DEEs. There are also many adults living with DEEs, though the prevalence is unknown. The burden of these conditions encompasses drug-resistant seizures, cognitive and motor challenges, behavioral issues and a high risk of premature death.

Despite advances in care, the unmet need in DEEs remains significant and more needs to be done to support people living with DEEs and their caregivers.

At UCB, we want to better understand the impact of DEEs on all aspects of daily life, which is why we, alongside patient advocates, developed research to investigate the real-world patient experience for people living with DEEs and their caregivers. The survey investigates seizures, sleep, communication, behaviour and four activities of daily living including eating, dressing, personal hygiene, and toileting.  

The 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. Responses from 490 caregivers were included in the interim analysis.

Results were shared at the American Epilepsy Society (AES) 2024 Annual Meeting and American Academy of Neurology (AAN) 2025 Annual Meeting:
 

Throughout the year, UCB will present detailed quality-of-life survey data at leading neurology and epilepsy-focused congresses focused on:

I recently spoke to my colleague Amelie Lothe, UCB’s Global Medical Community Head for Rare Epilepsies, who explained “Historically, the industry has focused on seizures alone, but without understanding and appreciating the impact that non-seizure burdens - such as sleep and behavior - have on family life, we are missing a huge piece of the patient and caregiver experience of the disease. This research is vital in understanding the full picture of living with DEEs.”

At UCB, we are ambitious about shaping science to help people living with DEEs and their caregivers. We want to create a better future for people living with DEEs and their families. Recognizing the impact of these conditions, and how much more there is to them than seizures is the right place to start.

*Names changed to protect anonymity.