SUDEP
What is SUDEP
- The sudden, unexpected death of an otherwise healthy person with epilepsy.
- The leading cause of death in people with uncontrolled seizures.
Characteristics
- No other cause of death is found after an autopsy.
- Often happens at night or during sleep when the death is not witnessed.
- Most common risk factor is having more than three generalized tonic-clonic seizures per year.
What is the Cause
The cause of SUDEP is Unknown.
Many areas are being looked at:
1. Impaired consciousness
2. Heart rhythm
3. Brain function
4. Difficult to detect seizures in sleep
5. Breathing
7. Medication effects
8. Sleep quality/deprivation
9. Other
Can it be Prevented?
- There is no sure way to prevent SUDEP.
- Currently there are only ways to reduce ones Risk.
- Research has found that people with all types of epilepsy, experiencing convulsive seizures, can be at risk.
How to Reduce the Risk
Avenues of risk reduction:
1. Medication
2. Epilepsy surgery
3. Neurostimulation
4. Diet change
5. Participation in research
- The best way to prevent SUDEP is to reduce seizure burden.
- Regular visits to your healthcare team.
- Living a healthy lifestyle; minimize stress.
- Taking medication as prescribed.
- Avoid seizure triggers when possible.
- Make sure family and co-workers know what to do for seizure first-aid.
Statistics
- More than 1 in 1,000 people with epilepsy die each year – same in children and adults.
- The risk increases to 1 in 150 for people whose epilepsy is not controlled by medication or another form of treatment (refractory epilepsy).
- SUDEP takes more lives annually in the United States than sudden infant death syndrome (SIDS).
Statistics
- More than 1 in 1,000 people with epilepsy die each year – same in children and adults.
- The risk increases to 1 in 150 for people whose epilepsy is not controlled by medication or another form of treatment (refractory epilepsy).
- SUDEP takes more lives annually in the United States than sudden infant death syndrome (SIDS).
Detection Devices
- To date, no seizure detection/monitoring devices have been proven to predict or prevent SUDEP.
- There are different options, like implants, wearable devices, and non-invasive systems, that can help alert loved ones to certain types of seizures and allow for early intervention.
- GREAT RESOURCE: Danny Did Foundation
Call to Action
- Research and advocacy are DESPERATELY needed to answer the questions remaining about SUDEP.
- SPEAK UP & talk about it!!
always consult a healthcare professional