SUDEP, the Importance of Raising Awareness, and Reminding Myself That There’s Really No Reason to Freak Out

I’ve never been so relieved to not be a stomach sleeper as I was when I opened my Gmail account a few days ago and saw an article about how sleeping in a prone position can be a risk factor for SUDEP (Sudden Unexpected Death in Epilepsy).

SUDEP terrifies me, which is why I try not to think about it. Ignoring things that are scary or uncomfortable, though, is clearly incredibly self-centred and problematic: people like me contribute to the general lack of knowledge surrounding this fatal complication of epilepsy. Yet I’ve always avoided reading more than a little about SUDEP, probably as a protective measure.

So when this random article popped showed up in my epilepsy Google alert, I decided that it was time to do a little research. (N.B.: for now, I’m just skimming the surface, touching mostly on what most pertains to my particular situation because it’s what hit me as I read through online resources, but I plan on returning to this topic relatively soon.)

A few relevant facts about SUDEP from the Epilepsy Foundation’s FAQ:

  • Each year, more than 1 out of 1,000 people with epilepsy die of SUDEP;
  • That number jumps to 1 of of 150 for people with poorly controlled seizures.
  • There is no known cause of SUDEP. However, risk factors include:
    • Having frequent, tonic-clonic seizures;
    • Falling within the 20–40-year-old age bracket;
    • Several that don’t pertain to me and that I almost didn’t even notice because I was so freaked out by the two above.

Before continuing, let me state that I realize that the odds are with me and that I shouldn’t let an article change how I perceive my situation—positivity and all that. But it’s hard not to have moments in which I stop to think about how epilepsy isn’t just about day-to-day challenges; there are also very real risks, not just SUDEP, but also brain and other injuries, status epilepticus, etc. Is it not human for that to get me down, at least a little?

SUDEP isn’t something that gets enough attention, even within the epilepsy community. I can’t say for certain, but if others are like me, the reluctance/failure to talk about it is might be due to ignorance, sure, but could also be due to fear, especially for those who have epilepsy or have a direct connection to a person with epilepsy.

SUDEP is tragic. SUDEP is horrifying. There needs to be more research done to understand the mechanisms that cause it; there needs to be more awareness raised in general. SUDEP Aware is a Canadian charity that aims to do just that, but it belongs to an extremely small group of such organizations.

Since there’s so little know about why people die of it, after four hours reading about SUDEP, the only preventative measures I know to take are to continue to take my medication, to keep managing my seizures as best I can, and, I suppose, to avoid sleeping on my back as this new research suggests. And that, my friends, is pretty damn scary.

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