More Than Seizures

Epilepsy is often synonymous with seizures, but for families affected by Developmental and Epileptic Encephalopathies (DEEs), including conditions like Lennox-Gastaut Syndrome (LGS), Dravet Syndrome (DS), and CDKL5 Deficiency Disorder (CDD), there are a multitude of challenges that go far beyond seizures, touching nearly every aspect of daily life.1,2
Through the More Than Seizures campaign, we aim to highlight the everyday, often overlooked realities faced by these families. 

The Unseen Impact on Daily Life

Developmental and epileptic encephalopathies are about more than seizures.1,2 They are about the interruptions and daily challenges:

  • The iron left on as a parent urgently manages a challenging behavior from their child, such as sudden aggressiveness.
  • The bath left running as a parent rushes to help their child who is experiencing seizures.
  • The parents’ restless nights as they support their child through disrupted sleep and worry about the risk of sudden unexpected death in epilepsy (SUDEP).

Our research is focused on more than seizures. We want to understand every aspect of life living with developmental and epileptic encephalopathies (DEEs).3

Picture illustrating a bath left running
Picture illustrating a iron left on

Hear Firsthand About the Impact of DEEs

Exploring Epilepsies 

Learn more about different aspects of DEEs in our series, Exploring Epilepsies.
 

References

  1.  Guerrini R, Conti V, Mantegazza M, et al. Developmental and epileptic encephalopathies: From genetic heterogeneity to phenotypic continuum. Physiol Rev. 2023;103(1):433-513.
  2. Specchio N, Trivisano M, Aronica E, et al. The expanding field of genetic developmental and epileptic encephalopathies: current understanding and future perspectives. Lancet Child Adolesc Health. 2024;(11):821-34.
  3. Bailey L, Dixon-Salazar T, Meskis MA, et al. Disruptive Impacts of Developmental and Epileptic Encephalopathies on Patient and Family Life: A Quality of Life Survey. 2024. AES. Poster number 1.498.