Why documenting lived experience with DEE-SWAS is critical

These are not clinical descriptions of DEE-SWAS.

They show what, as families in a global network, we share with each other about what life with this syndrome can be, day to day. Nothing on this website represents a universal experience or expert clinical, educational or disability advice.

Research has already achieved incredible things, helping define syndromes, genetics and seizure patterns (for example, the seminal work of Ingrid Scheffer and colleagues) (1). However, in rare conditions more broadly, lived experience is less often captured in research (2).

Around 1 in 590 children are diagnosed with a developmental and epileptic encephalopathy (DEE), and more than a quarter present after age three, including children with DEE-SWAS and EE-SWAS (3). While individual syndromes such as DEE-SWAS are considered rare, DEEs are not rare in a global sense. There are around 2.4 billion children under 18 in the world, which suggests that more than 4 million children worldwide may be living with a DEE, based on current prevalence estimates (3, 4).

The burden is likely to be even higher in parts of the world where infections, birth complications and limited access to early care are more common, including regions such as sub-Saharan Africa and South Asia, where causes of epilepsy such as neonatal conditions, infection and other preventable factors are more common (5).

This site highlights real-life factors that shape everyday moments, to either hold a child with DEE-SWAS back or help them move forward, depending on how well their needs are understood and supported.

I am deeply grateful for the support my child’s care team has provided. At the same time, there are many everyday situations beyond clinical settings where children with DEE-SWAS live, learn, and participate, and where additional opportunities to support them may be identified. Documenting these lived experiences is a way of amplifying children’s perspectives. It’s a way to increase awareness of what families and supporters are already doing to improve everyday quality of life so that people don’t have to keep going through hard times in isolation to come to identify ideas themselves. To build shared understanding across education, community and family settings.

I think realising this vision isn’t something any one group can do alone. It needs genuine collaboration, between educators in classrooms supporting children with developmental and epileptic encephalopathies (DEEs), allied health professionals, families, and the wider circle of people who know and care for these children, alongside clinicians and researchers.

From a lived experience perspective, it’s hard not to wonder what is already working, quietly, in these spaces. There must be practical strategies and insights being used every day. Not only for children with DEEs, but also in other conditions where cognitive impairment has been more deeply explored, like acquired brain injury or dementia. It feels reasonable to ask: can we begin to learn from and adapt these approaches now for children with DEE-SWAS and related conditions, rather than waiting? Of course, there are always calls for caution: for change to follow long and careful processes of formal testing. But those processes can take years. For many families, including ours, things already feel as difficult as they can be. When a child is in such a critical developmental window, time matters in a very real way. Waiting, in itself, can carry risk. This isn’t about dismissing research or rigour. It’s about recognising the urgency that comes from lived experience, and asking whether there is space to act, learn, and adapt in parallel, so that children don’t lose precious time while we work toward stronger evidence.

1. Scheffer, I. E., Berkovic, S., Capovilla, G., Connolly, M. B., French, J., Guilhoto, L., ... & Zuberi, S. M. (2017). ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology. Epilepsia, 58(4), 512-521. DOI: https://doi.org/10.1111/epi.13709

2. Von der Lippe, C., Diesen, P. S., & Feragen, K. B. (2017). Living with a rare disorder: a systematic review of the qualitative literature. Molecular genetics & genomic medicine, 5(6), 758-773.
   DOI: https://doi.org/10.1002/mgg3.315

3. Poke, G., Stanley, J., Scheffer, I. E., & Sadleir, L. G. (2023). Epidemiology of Developmental and Epileptic Encephalopathy and of Intellectual Disability and Epilepsy in Children. Neurology, 100(13), e1363–e1375. DOI: 10.1212/WNL.0000000000206758

4. United Nations, Department of Economic and Social Affairs, Population Division. (2024). World population prospects 2024. https://population.un.org/wpp/

5. Feigin, V. L., Vos, T., Nair, B. S., Hay, S. I., Abate, Y. H., Abd Al Magied, A. H., ... & Gadanya, M. A. (2025). Global, regional, and national burden of epilepsy, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021. The Lancet Public Health, 10(3), e203-e227. DOI: 10.1016/S2468-2667(24)00302-5