What is SUDEP?
Sudden Unexplained Death in Epilepsy or SUDEP refers to the sudden death of a person with epilepsy without determinable 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.
What causes SUDEP?
What are the chances of dying from SUDEP?
Could SUDEP happen to me?
What can I do to lower the risk of SUDEP?
Should people with epilepsy live differently because of SUDEP?
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.
Do doctors have a role to play with regard to SUDEP?
The risk of SUDEP, while relatively small, is nevertheless real. We believe it should be discussed openly by doctors with patients 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. “Why weren’t we told?” is a common reaction of family members bereaved by SUDEP.
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 people aged 20 to 40 with uncontrolled epilepsy. 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 that it be formally identified as SUDEP. In addition to information, families bereaved by SUDEP need to be offered a compassionate ear and grief counselling.
Where can I find more information on SUDEP?
For more information, contact the SUDEP Awareness and Support Association (SASA) via e-mail at firstname.lastname@example.org.