Sudden Unexpected Death in Epilepsy (SUDEP): Why is SUDEP Action Day important?
Sudden Unexpected Death in Epilepsy (SUDEP) Action Day is October 23. This day was previously known as SUDEP Awareness Day. Sudden Unexpected Death in Epilepsy (SUDEP) Action Day is devoted to raising awareness about sudden unexpected death in epilepsy, encouraging people with epilepsy to learn about SUDEP and their risk, and honoring the lives of those we have lost. Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness. Anyone can develop epilepsy.
SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes. Studies suggest that each year there are about 1.16 cases of SUDEP for every 1,000 people with epilepsy, although estimates vary. SUDEP deaths are often unwitnessed with many of the deaths occurring overnight. There may be obvious signs a seizure has happened, though this isn’t always the case.
No one is sure about the cause of death in SUDEP and it may differ between cases. Some researchers think that a seizure causes an irregular heart rhythm. Other research has shown that breathing difficulties following a seizure could lead to death.
While there is no cure to prevent SUDEP, there are steps that patients with epilepsy and their families can take to minimize the risk as much as possible. Strategies include:
- Striving for maximum seizure control by closely following treatment plans
- Regular exercise, and lifestyle habits that reduce stress and seizure activity
- Regular doctor visits, especially if convulsive seizures are not controlled
- Considering options such as epilepsy surgery, or dietary therapy
- Talking with your doctor about a cardiac evaluation, to rule out heart problems
