October 18th is a day of international action, when families and advocates advance action to figure out the “why” of Sudden Unexpected Death in Epilepsy. The goals for this day are to encourage people with epilepsy to learn about SUDEP and their individual risk, motivate research, and to honor the lives lost to the most common form of death in epilepsy.

Learn More at https://sudepactionday.org/

What is SUDEP?

When a person is diagnosed with epilepsy it can be overwhelming and they often have questions about their life and future. Getting reliable information and working closely with your health care team is key to dealing with the challenges of a life with seizures. Often, mortality in epilepsy such as Sudden Unexpected Death in Epilepsy (SUDEP) is difficult to talk about. SUDEP is said to occur when a person with epilepsy dies unexpectedly and was other-wise healthy. The death is not known to be related to an accident or seizure emergency such as status epilepticus. However, it occurs more frequently in people with epilepsy whose seizures are poorly controlled. When an autopsy is done, no other cause of death can be found.

SUDEP and mortality in epilepsy can be an uncomfortable topic. With education and awareness, people living with epilepsy can feel empowered to understand their risks and work with their health care team to understand seizure management and a lifestyle plan to live each day to the fullest.

Why is it important to discuss mortality in epilepsy?

In a 2016 survey, almost all caregivers and nearly 2 in 3 people with epilepsy said they worry about death from epilepsy or seizures. Almost half of respondents said learning more about SUDEP could make a difference in how they approach seizure control. People know about the dangers of fire and Sudden Infant Death Syndrome (SIDS), but there is very little awareness about the risk of death from epilepsy. And unfortunately, SUDEP kills more Americans than either of these.

Have A Discussion

Knowing about and discussing SUDEP with your health care team is important.