One in 26 Americans will have epilepsy in their lifetime and 65 million people live with epilepsy worldwide. Our goal is to help people understand the importance of saying the word “epilepsy” whether it be an individual with epilepsy who avoids the word because they‘re worried about people’s reaction or a medical professional who speaks of seizure disorders to their patients without ever using the word “epilepsy”. We can’t fund research to find a cure for, raise awareness about, or fight the stigma against epilepsy if we don’t use the word.

Look at the many #SayEpilepsy stories below to hear the reasons we need to Say the Word #SayEpilepsy. Share these videos on social media or record a video (or write) your own Say the Word #Say Epilepsy story. Please tag us when you post your video on social media so that we can hear your #SayEpilepsy story.

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It’s not “generalized seizure disorder” it’s epilepsy

“One of the most difficult parts of the last 12 years has been not knowing what I was fighting.”

It’s scary to see your child have seizures and feel helpless

“More people need to talk about epilepsy. More people need to be part of this fight.”


Treatment-Resistant Epilepsy

“20 years ago, I was diagnosed with a word I had never heard before. Epilepsy.”

Father of a Child with Epilepsy

“There is absolutely nothing I can do about it. It is the hardest thing in the world to endure.”

We were wrong

“The only way this is going to stop is if we find a cure.”

Talk about epilepsy

“The medications caused many side effects and never completely took away her seizures.”


What we need is a cure

“Doctors still can’t figure out why she is having seizures or how to stop them.”

Please speak up

“I got first diagnosed with epilepsy at birth. I am now 13 and I have lived with it my entire life.”

She lost her job

“My friend has epilepsy. Her parents told her don’t ever tell anyone you have epilepsy.”

We need to say the word

“An estimated 470,000 children in the US live with epilepsy.”

1 in 26

“I didn’t think I knew anyone with epilepsy.”

We were lucky

“As a young boy, I had a number of seizures that my parents didn’t really understand.”

Still a stigma

“We can’t fight the stigma against what we don’t talk about.”

65 million people

“65 million people around the world have epilepsy. For one-third of them, existing treatments offer no relief.”


Fear of discrimination – Stigma

“With all of the issues people living with epilepsy face, the stigma should not be one of them.”

30% see no seizure freedom

“No one should have to go through life without their child or loved one at the hands of epilepsy.”

Unable to drive

“While this seems like a minor inconvenience, it really was a blow to her identity as a mother.”

Over 3.4 million Americans

“We need to raise awareness for this neurological disorder.”


It changed our lives

“My little brother, Dominic, was diagnosed with epilepsy five years ago.”

Epilepsy is there, constantly

“Say epilepsy so she no longer needs to keep her diagnosis hidden at work.”

We have to change the conversation

“My best friend suffered his first seizure at the age of 31 outside Wrigley Field.”