SUDEP Awareness & Support Association
What is SUDEP?
SUDEP: the sudden, unexpected death of a person with epilepsy;
cause unknown.
SUDEP stands for 'Sudden Unexplained Death in Epilepsy'. It is a category of uncommon sudden death, used when a person with epilepsy dies unexpectedly, without apparent cause. In a typical case of SUDEP, an otherwise healthy person with active epilepsy dies suddenly, unobserved, while in bed. For this reason, SUDEP reminds some people of Sudden Infant Death Syndrome (SIDS) in newborns.
Research indicates that there is likely more than one explanation for SUDEP. According to one theory, electrical discharges in the brain may change the electrical status of the heart, affecting its rhythm. Another theory is that breathing is stopped by a seizure. In either case, a post-mortem examination reveals no anatomical cause of death.
The actual risk of SUDEP remains uncertain and more research is badly needed. It has been estimated that 1 in 1,000 people with epilepsy will die of SUDEP each year.
A Message for People Living with Epilepsy
When people with epilepsy are told about SUDEP, the ask "Will it happen to me?" The chances of dying from SUDEP are remote. Some people may be more at risk than others, especially young men aged 20-40 with tonic-clonic (grand mal) seizures which are not fully controlled by medication. Not taking medication correctly or regularly, being alone during seizures and using alcohol or street drugs can also be factors.
"What can I do to lower the risk?" No one know for sure, but seeking treatment regularly to get the best possible seizure control, avoiding sudden drug withdrawal, and taking one's medication regularly are recommended. Avoiding alcohol, maintaining regular and adequate sleep patterns, exercising, eating nutritious meals and learning to manage stress are simple things that may make a difference. Concerned relatives should know that staying with someone for 15 to 20 minutes after a seizure to ensure they are breathing easily would be useful.
It is important for people with uncontrolled epilepsy to balance the awareness of their slightly increased risk of death with the need to live as normal a life as possible. There are usually very few things that people with epilepsy cannot do.
A Message for Families Bereaved by SUDEP
"Why weren't we told?" is a common reaction of family members bereaved by Sudden Unexplained Death in Epilepsy. (SUDEP)
This may be the first time you have ever heard of SUDEP. You may want more information about it, or to talk to a grief counsellor or to other people bereaved by SUDEP. Or you may be interested in trying to prevent this from happening to others by advocating for more research into what causes this mysterious and largely unknown syndrome.
We invite you to contact SASA: the SUDEP Awareness and Support Association, a network started by a SUDEP-bereaved parent.
A Message for Doctors
The risk of SUDEP, while relatively small, is nevertheless real and, we believe, should be discussed openly with your patients who have epilepsy and their families. Frank and reasoned discussion may improve compliance with medication and lifestyle regimens. It may also prevent the family feeling betrayed by the doctor, should a sudden death ever occur.
Most victims of sudden death syndrome are found to have sub-therapeutic blood levels of anti-epileptic drugs. It is prudent to try to predict those who might be most susceptible to SUDEP, particularly young males aged 20 to 40. Occasionally, there are preceding emotionally stressful events. It may be beneficial for these patients to be seen with increased frequency during this period and compliance assessed more frequently.
If a SUDEP death should occur, we believe it is important the it be formally identified as SUDEP. In addition to information, families bereaved by SUDEP need to be offered a compassionate ear and grief counselling. A referral can be made to SASA: SUDEP Awareness & Support Association, or to Bereaved Families of Ontario.
What is SASA?
SASA, the SUDEP Awareness & Support Association is a network of people who are affected by Sudden Unexplained Death in Epilepsy. It was started by Ann Farrell, who lost her adult daughter to SUDEP in 1995. SASA is associated with the Epilepsy Toronto and Epilepsy Ontario, and works in conjunction with Bereaved Families of Ontario.
SASA offers information and support to people who have lost a loved one due to SUDEP, and is working to raise awareness of SUDEP among people with epilepsy, doctors, coroners, and the general public. More research into this mysterious syndrome is necessary if SUDEP is to be prevented in the future.
To get more information or to join the SASA network, contact
