SUDEP Action Day Date in the current year: October 16, 2024

Epilepsy is one of the most common neurological disorders; it is characterized by recurrent seizures. Just like other long-term conditions that can’t be cured, only managed, epilepsy comes with certain risks and complications. Sudden unexpected death in epilepsy (SUDEP) is a fatal complication of epilepsy with an unknown cause.

According to statistics, epilepsy results in more than 125,000 deaths globally each year. The main causes of death in people with epilepsy are accidental injuries (for example, falling and hitting one’s head while having a seizure), drowning, and SUDEP. SUDEP is when a person with epilepsy dies suddenly and unexpectedly, and the death is not from injury, drowning, or other known causes. Between 8 and 17% of all epilepsy-related deaths are attributed to SUDEP.

The exact cause of SUDEP is not yet understood, but researchers suspect it may happen due to breathing and/or heart rhythm changes during a seizure. Risk factors for SUDEP include poor epilepsy management, generalized tonic-clonic seizures, drug-resistant epilepsy, and early onset of seizures. Being asleep during a seizure may also be a risk factor; many SUDEP deaths occur overnight with no witnesses.

Sadly, not all people with epilepsy are aware of or told about SUDEP and epilepsy risks, which prevents them from making informed decisions about epilepsy management and lifestyle. Many bereaved families that didn’t know about SUDEP wish they had been told about this deadly complication because this information might have saved their loved one’s life or at least prepared them for the possibility of sudden unexpected death. This is why epilepsy organizations around the world strive to raise SUDEP Awareness.

The SUDEP Action Day campaign is spearheaded by SUDEP Action, the only charity in the United Kingdom that supports and works alongside those who have lost love ones to a sudden epilepsy-related death. SUDEP Action launched the campaign in 2014 as SUDEP Awareness Day and renamed it SUDEP Action Day in 2017 to highlight that awareness is not enough – it is important to take active action to empower people living with epilepsy and their families.

SUDEP Action Day aims to educate people with epilepsy about SUDEP and their individual risk, raise awareness of ways to manage epilepsy to reduce the risk, honor the lives of those who suffered SUDEP, and promote research into SUDEP to save more lives. The campaign is supported by epilepsy organizations around the globe.

You can get involved with SUDEP Action Day by learning more about SUDEP and sharing the information you’ve learned with others, spreading the word with the hashtags #SUDEPActionDay and #SUDEP, and donating to an organization that funds epilepsy research. If you’ve lost a loved one to SUDEP, consider sharing their story on social media to raise awareness (of course, only if you’re comfortable doing it).