Why Everyone Should Know about Epilepsy and SUDEP

The unexpected, shocking passing of Disney Channel star Cameron Boyce shook his fans and many others who have suffered a similar loss from epilepsy and seizures. I can say this because on Mother's Day morning in 2014, my daughter Lydia, just 7 years old, died due to SUDEP (sudden unexpected death in epilepsy).

Born with a rare chromosome disorder, my daughter was diagnosed in 2013 with a very rare, subclinical epilepsy. Finding out about her epilepsy will forever be remembered as one of the most difficult days in my life. I can remember the morning in her hospital room the physician on service woke us with the news after a routine overnight EEG. While my sweet pea still slept peacefully in her bed, the doctor spoke loudly and firmly about this latest epilepsy diagnosis. I heard the words "rare, nocturnal, invisible to the naked eye."

I'll always say it wasn't the actual diagnosis that threw me, but rather her serious tone delivering it. We needed to start attacking the beast in her brain.

While her medical team never mentioned SUDEP, we knew through our network of special needs parents that her rare epilepsy put her at high risk of death. We often put our sweet girl to bed not knowing if and how much she was seizing. Each morning, we walked into her room holding our breath, hoping we'd see her smiling face and hear her giggle, ready to start the new day. We were terrified at the possible outcome. Little did we know, 1 in 150 people with uncontrolled epilepsy actually do die. I'm guessing I was like much of the world today — knowing little about epilepsy. 

During my daughter's short, yet full life, I had been an advocate in all things Lydia. After her death, I realized my advocacy for Lydia was far from over and others needed my voice too. I just didn't know what that would look like until I found my latest role —  advocating for people with epilepsy and seizures and all those like me who have lost someone tragically and suddenly to epilepsy.

Now I use my story and my role at the Epilepsy Foundation's SUDEP Institute to educate those living with epilepsy who have never heard of SUDEP and guide them on broaching this topic and having an open conversation with their physician. I am the person who talks with physicians, urging them to discuss SUDEP with their patients because families impacted by epilepsy tell me every day they want to know more. They want to understand their individual risks and the steps they can take to reduce those risks. They want to have these hard, scary conversations before they lose someone they love. 

Lastly, and most importantly, I am now someone who feels an immense responsibility to #EndSUDEP.

Sadly, just like my Lydia, people are dying from SUDEP, with most never getting the public's attention. We cannot let the conversations and awareness fall by the wayside. We may be literally and figuratively deathly afraid of having these conversations, but they must happen to save lives. 

If you or loved one lives with epilepsy, ask your doctor about SUDEP. If you are a medical provider treating someone with epilepsy, talk with your patients about their risk and how to reduce them. Everyone can learn about epilepsy and seizures at epilepsy.com/SUDEP. I, for one, won't give up bringing awareness to SUDEP until we end it, even if it isn't in the news. I surely hope society does the same.

Sally Schaeffer is the senior director of the Epilepsy Foundation's SUDEP Institute.