I’ll be honest; I was at first a bit reluctant to write this blog post. Today, October 23rd is SUDEP Action Day (previously SUDEP Awareness Day). Perhaps, in some way, the name shuffling speaks to the reality that we are still learning how to comfortably talk about SUDEP, or Sudden Unexpected Death in Epilepsy. Perhaps, my hesitancy to write speaks to the discomfort even more. I like the idea, though, that we’re past a mere time of awareness and heading into a season of action where SUDEP is concerned.
As doctors, I’d like to think that we’re finally getting better at talking about SUDEP with our patients, mostly because families have demanded that we do better. And I know that we still have a long way to go. As a pediatric epileptologist, I’ve seen my own practice evolve over the years, from failing to mention SUDEP to some patients because the risks were relatively low (and I didn’t want to worry an already worried sick mother) to now trying to present all families with the SUDEP facts and knowledge they deserve. For years, around the world, far too many families reported that after the heartbreaking tragedy of losing a loved one to SUDEP, what made it even worse was that no one had even so much as warned them that SUDEP existed. We can do better.
