ABSTRACT
Sudden unexpected death in people with epilepsy was recognized in the early twentieth century (Spratling 1904), along with identified risks and recommendations for its prevention; however, by the 1960s a myth had gained hold in the medical literature that epilepsy was not fatal. “Patients with epilepsy had moved from asylums into the community and there was much less opportunity for observation. Risks from epilepsy were minimized then denied; that seizures could not be fatal became ‘common knowledge’ despite evidence to the contrary” (Nashef 1995). The development of effective pharmacotherapies gave added reassurance to the community that the condition would be controlled. However, deaths continued to occur and it became clear that there was no medical explanation. In the United Kingdom, bereaved families, shocked by the lack of scientific knowledge, began working to provide mutual support and to seek answers. A charity was formed in 1995 (originally known as Epilepsy Bereaved and now known as SUDEP Action), and the phenomenon defined as sudden unexpected death in epilepsy (SUDEP) rapidly became a specific focus for research and action in clinical practice.
