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16: SUDEP

For those who aren't aware, SUDEP is an acronym for Sudden Unexpected Death in Epilepsy. It's a condition that anyone with epilepsy is constantly living with. Although it is a condition specific to those with epilepsy, less than one percent of people living with epilepsy are victims of SUDEP.

Very little is known about SUDEP, as its rarity and causes make it incredibly hard to study. Right now, what we do know is that irregularities in heartbeats can cause SUDEP, and also an acute form of sleep apnea can be triggered by a seizure and cause death. My wife has expressed a constant worry about SUDEP, but no one else I know has ever addressed it around me. This is most likely because most of them don't even know what it is, and those who do, know there isn't anything they can do about it.

Personally, I have never been afraid of SUDEP. Yes, it's something that I constantly live with, but it's not something that fear or caution can help. SUDEP is completely out of my control. About 1 in 1,000 people who live with epilepsy are victims of SUDEP every year. While doing my initial research for this post, I thought it was lower than that. Still it's not something that hangs over my head. I, like most people, have many pressing issues in my life to keep me occupied. This just happens to be one of the least productive things to worry over.

Judging from the communities I belong to, there is a post about every month by someone new worrying about them or a loved one experiencing SUDEP. I can only imagine this is a sampling of those who are worried, and only some decide to bring their worries to the surface.

Of course, this is only anecdotal, as I have not conducted any sort of scientific poll or controlled study. But my experience has led me to believe that despite many people with epilepsy worrying about SUDEP, it is their family members who worry more. Which is understandable.

There isn't much that can be taken away from this post, due to the fact that it is so unpredictable, uncontrolled, and unstudied. However, I do recommend that people try to educate themselves on the subject, whether you know someone with epilepsy, you have epilepsy yourself, or are just interested.

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