SUDEP stands for Sudden Unexpected Death in Epilepsy. It refers to deaths in people with epilepsy that are not from injury, drowning, or other known causes. Most, but not all, cases of SUDEP happen during or right after a seizure. Approximately 1 death in every 1,000 people will occur from SUDEP every year.

SUDEP does not occur for one single reason, it can happen at any time to anyone. The greatest risk factor for SUDEP is having tonic clonic seizures (Grand Mal). Cardiac arrhythmias may occur, respiratory issues or oxygen levels that get cut off during a seizure can lead to  death in both convulsive and non-convulsive seizure.

While anyone with epilepsy can be affected, certain factors increase the risk of SUDEP. Poorly controlled or frequent seizures, especially generalized tonic-clonic seizures, are significant risk factors. Seizures occurring during sleep, an early onset of epilepsy, and inconsistent use of seizure medication also elevate the risk. Additionally, a history of alcohol or substance misuse, living alone, and being male have been associated with a higher likelihood of SUDEP. It's important to remember these are risk factors, and SUDEP can still occur in individuals without them.

• It is estimated that over 3,000 people die from SUDEP each year in the United States.

• Approximately 1 in 1,000 adults with epilepsy die from SUDEP annually.

• The risk is lower in children with epilepsy, estimated at around 1 in 4,500 per year.

• SUDEP is the leading cause of epilepsy-related deaths.

• It can happen to anyone with epilepsy, at any age.

• Most cases of SUDEP occur during sleep, often unwitnessed.

• There is no single known cause of SUDEP, but research is ongoing.

• The risk of SUDEP is relatively low for individuals with well-controlled epilepsy.

• The exact mechanisms leading to SUDEP are not fully understood, but current research focuses on several possibilities:

• Respiratory Dysfunction: Seizures can cause a person to stop breathing or have pauses in breathing (apnea). If these pauses are prolonged, it can lead to a dangerous drop in oxygen levels reaching the brain and heart. The airway may also become blocked during a convulsive seizure, leading to suffocation.

• Cardiac Arrhythmias: Seizures can sometimes cause dangerous irregular heart rhythms (arrhythmias) or even cardiac arrest. The abnormal electrical activity in the brain during a seizure may trigger these heart problems.

• Brainstem Dysfunction: Seizures might suppress or interfere with the function of vital areas in the brainstem, which control breathing, heart rate, and other essential bodily functions. This disruption could lead to life-threatening changes.

• Autonomic Nervous System Dysfunction: Seizures can affect the autonomic nervous system, which regulates involuntary functions like heart rate, blood pressure, and breathing. Dysfunction during or after a seizure could contribute to SUDEP.

• Genetic Factors: Research is exploring whether certain genetic factors might make some individuals more susceptible to SUDEP.

Loss of Life: The most immediate and tragic effect is the premature death of a person living with epilepsy.

• Grief and Bereavement: Families and loved ones experience profound grief, shock, and loss. The unexpected nature of SUDEP can make the grieving process even more challenging.

• Emotional Distress: The fear of SUDEP can cause significant anxiety and stress for individuals with epilepsy and their families. This can impact their quality of life and mental well-being.

• Lack of Answers: The unknown causes of SUDEP can leave families searching for answers and struggling to understand why this happened.

• Impact on the Epilepsy Community: SUDEP highlights the serious risks associated with epilepsy and underscores the need for more research, awareness, and better seizure management.

• Need for Support: Families bereaved by SUDEP often require specialized support and resources to cope with their loss.