What is SUDEP?

SUDEP stands for Sudden Unexpected Death in Epilepsy. While many people can enjoy a long life despite their epilepsy, sometimes it can be fatal. Some doctors do not even discuss this possibility with their patients because they think it will be too frightening, and because of this the importance of addressing SUDEP is often undervalued. Studies vary in terms of the mortality rate due to SUDEP, but it is estimated that SUDEP accounts for 15-20% of all cases of death in people with epilepsy. The casuses of SUDEP are still unknown, although an assessment of risk factors does exist. For more information, visit this page from the Epilepsy Therapy Project.

In the News

According to the American Epilepsy Society, “it is very uncommon but not unheard of for people to die with a seizure.”¬†I suspect that the families that have lost a loved one to SUDEP might have a different opinion.

‘Rare’ and ‘very uncommon’ are what patients hear from medical professionals when they ask the question, “Can I die from epilepsy?” But after having epilepsy for years, I just didn’t believe that the odds were in our favor, considering 3 Million people in the USA have it (and 60 mil in the world). So I did a little digging.

It didn’t take much. I quickly found that the AES considers ‘very uncommon’ to be the approximately 45,000 deaths each year.¬†According to the Epilepsy Foundation of America, about the same number of people die each year from seizures as die from either breast cancer or traffic accidents.

To learn more about SUDEP and to connect with others dealing with the loss of a loved one, please take the time to visit SUDEP.org