Epilepsy.com conducted a survey in May 2016 of more than 1,000 people with epilepsy and people who are caregivers for people with epilepsy to learn more about the community’s knowledge of SUDEP and associated risk factors.
- Almost all caregivers and nearly 2 in 3 respondents with epilepsy worry about death from epilepsy or seizures.
- Less than 1 in 5 respondents with epilepsy and slightly more than 1 in 4 caregivers reported that they’ve had a discussion about SUDEP with a healthcare provider.
Controlling seizures is the best way to reduce the risk for SUDEP. At least 3 out of 10 people with epilepsy continue to have seizures because available treatments do not completely control their seizures. Among the 70% who could respond to medications, many are not seizure free, settling for "good enough" or living with bothersome side effects.
- Only about half of those surveyed considered “no seizures of any type” as the definition of good seizure control.
- Other definitions of seizure control reported by people with epilepsy include:
- Having seizures that don’t impact day-to-day life
- Significant reduction in seizures
- Only having auras
- Only having seizures in bed, at night
- Only just over half of respondents with epilepsy and one third of caregivers reported that they or those in their care had good seizure control.
- 1 in 3 people who said they had achieved seizure control reported having seizures monthly or, in many cases, more frequently.
- Only about a third of respondents felt continued seizures were extremely risky.
4 Key Behaviors to Fight Seizures and SUDEP
To help people with epilepsy reduce their risk of continued seizures and SUDEP, experts have identified four critical behaviors: take medication as prescribed, get enough sleep, limit alcohol, and strive to stop seizures.
- Taking medication as prescribed was most identified as an important behavior that can help reduce the risk of having seizures or help manage seizures by both respondents with epilepsy and caregivers.
- Getting enough sleep was also rated highly by both respondents with epilepsy and caregivers as an important behavior that can help reduce the risk of having seizures or help manage seizures.
- While only 1 in 5 of respondents with epilepsy rated avoiding alcohol as an important behavior that can help reduce the risk of having seizures or help manage seizures, 2 in 5 reported they do avoid alcohol.
- Nearly 1 in 4 respondents with epilepsy and more than 1 in 3 caregivers rated seeing an epileptologist (epilepsy specialist) as an important behavior that can help reduce the risk of having seizures or help manage seizures, and yet just less than half of respondents with epilepsy and close to 3 in 5 caregivers report visiting a doctor regularly.
The Importance of Education
The Epilepsy Foundation SUDEP Institute, comprised of leading epileptologists and epilepsy organizations, is urging people living with epilepsy and their caregivers to aim for zero sudden deaths from epilepsy and seizures by adopting and practicing four key actions: take medication as prescribed, get enough sleep, limit alcohol, and strive to stop seizures. Healthcare professionals must drive communication and discussion about the importance of adopting these behaviors.
- Almost half of respondents with epilepsy and caregivers stated that learning more about SUDEP could make a difference in how they approach seizure control.