There is a little discussed topic in the Epilepsy community that only some of us know: SUDEP – Sudden Unexpected Death in Epilepsy.
SUDEP is very real. It happens to 1 in 1000 adults with Epilepsy and 1 out of 4500 children each year. It is the leading cause of Epilepsy mortality.
The only cure for SUDEP is seizure control which many patients do not have or struggle with.
Recently, a beautiful artistic soul, who had a wonderful career in Hollywood passed away and the event has placed SUDEP in the forefront of the Epilepsy community. We, as a whole, do not discuss this tragic truth enough. We bury it away and are shocked when it happens. Our medical leaders do not wish to speak on it more than necessary for the widespread panic that it could create.
I was personally, blissfully unaware of what SUDEP actually is until my second child with Epilepsy. It was then I discovered the information about this occurrence through Epilepsy awareness websites. It wasn’t until much later that our neuro mentioned it personally.
I learned more about SUDEP from organizations that help families like mine to prevent SUDEP from happening to families like mine. Organizations started in memory of loved ones, children who passed away from this very real condition. Organizations whose hearts were broken but strive to help save children like mine every day.
Even with these organizations, there isn’t a lot that can be done in the fight for Epilepsy. Spreading awareness of Epilepsy and of SUDEP is the best way to help others. There is no real way to prevent a seizure or death from a seizure. There are devices, pillows and other things that can help create a safer environment for our loved ones but they are not fail-proof.
Every year that my daughter goes with limited seizure control and struggles with medications puts her more at risk for SUDEP. It’s a very real fear in our household and why we choose to continue medication for her. Her Neuro is hopeful that once she finishes puberty that her seizures will stop but there is no guarantee for that and no reason why she continues to have them. We can only hope that the safety precautions and devices that we have in place, along with her medication will keep her alive and well each day.
I strive as a blogger in the Epilepsy community to help others better understand what we live with and how Epilepsy affects our lives. The challenges and struggles we face, SUDEP being only one of many. Learning more about seizures, about Epilepsy and about SUDEP may help you to save a life in the future.