We are the
Our purpose is to ensure ...
- Everyone knows about epilepsy and seizure first aid.
- People with epilepsy can access specialty care faster and gain greater seizure control, and they and their families can benefit from supportive care.
- People with epilepsy can live full lives in their communities.
- People with epilepsy don't die early or suffer injuries.
- People with epilepsy can benefit from research and new therapies.
- Everyone can participate with us in the fight to End Epilepsy.
By the Numbers
Every number is a real person and a real story
who have epilepsy
who have epilepsy
seizure in their lifetime
with epilepsy in their lifetime
Use Your Brain to
Learn and Share Seizure First Aid.
Learn Seizure First Aid and share it with at least 26 others leading up to and during November Epilepsy Awareness Month. Post on your social channels and include hashtag:
Saber, how would you describe what you do for a living? I seek ideas and I try to explore them in a creative way. So basically, I'm a creative person. I'm a creative person AND I have epilepsy.
Saber, what makes you angry about epilepsy? What makes me angry about epilepsy is the way people perceive this condition. And I think that's something that we can change. This condition is such an unknown and it's such a visceral condition. So when people see a seizure it's a very scary thing to witness. It throws you off. So right off the bat it-- it puts you in a different place. For instance, one of the things that I deal with because I'm kind of a big guy and I'm strong, and I have the tattoos -- when I have a seizure and I'm on the street, I usually get accused of coming out of a drug reaction or something of that nature.
So what kind of seizures do you have? I'm still learning about the seizures that I have. I still haven't quite had the right access to care after twenty some years of having these seizures. Just recently was the first time I ever saw a specialist. So I haven't really been fully diagnosed properly. So I don't know what's happening yet.
So why is it after twenty years you still haven't been properly diagnosed or seen the right people? Welcome to America. Plain and simple. You are a number and once you get in that stream you-- your access to certain facilities and certain care is either denied or unavailable. And with preexisting conditions it was always a challenge for me.
How does having epilepsy affect the people you're closest to? Honestly the people-- the hardest thing about epilepsy is how it affects the people closest to you. I mean this is the number one question and it's because this condition causes these situations where everybody around you has to suffer through it. And that's the challenge. You know? It affects your mind, your personality, your well being and how you think and how you function. When your faculties are completely taken from you, when your attitude and your perception has been changed, when your feelings and your personalities have been affected, when your attitude is definitely affected of course everyone's going to suffer around me.
Is there any good thing about epilepsy? The good thing is that I've developed a sense of empathy and perception that I could have never gained otherwise. So the experiences and the places that I've been with this condition has expanded who I am as an individual.
Tell us about your art and how has having epilepsy had an impact on it.
Well, my art is-- is everything to me in the sense that that's who I am at my core being. My art is how I express myself to the world and how I communicate. So when epilepsy and these seizures completely invaded my life and invaded my well being and invaded everything that is my life, I've had to adjust. And my art has changed or been affected by this condition. For instance one of the most important things I've learned through my art is that art making is a path to healing.
So after I have a seizure, in order for me to heal and move forward I create paintings and pieces. And as I move forward with the creative process it allows my mind to grow and heal and-- and reconnect. And so art making and art practice has a direct correlation to healing for me.
How has the Epilepsy Foundation helped you with your epilepsy? The Epilepsy Foundation has helped me by connecting me with a specialist for the first time in my entire life. And the fact that I've been able to connect with others that have this condition, it's kind of the first time in my life I've even done this. So I find tremendous value in working with the Epilepsy Foundation and pushing this cause forward. I think it's something very powerful.
What does "end epilepsy" mean to you? End epilepsy means to me that we find the tools together. That we come together collaboratively and use our tools to battle this condition and make it easy for those who suffer from it.
Tell us about your first seizure. I had my very first grand mal seizure in the shower and I fell and I got over 33 stitches in my ear. And it was really, really scary for me because I had never experienced anything like it in my entire life. I didn't really know what epilepsy was. And I never thought that I would get epilepsy because I had never gotten a head injury and it's never been in my family. And I don't know, it's just-- it's never come up.
What’s the worst thing about epilepsy? The worst thing about having epilepsy is probably the side effects. It's-- like the hair loss and the weight loss because those two things have definitely affected me the most.
How did your friends deal with your epilepsy? I had a lot of good friends that didn’t understand...I've definitely grown apart from some of my friends. And it's hurt. This year I’m a junior in high school and I’m looking forward making new friends who actually care about me and talking about epilepsy.
You helped pass a new law in Kentucky. Tell us about it. I became a part of the Teen Speak Up Program. And we talked to the Epilepsy Foundation about the fact that teachers didn’t know seizure first aid. And we went from there to helped create a new law. It's called the Lyndsey Crunk Act. And it’s going to create seizure-smart schools and educate teachers in schools about what to do if a student or someone is having a seizure, because most people don't know seizure first aid.
Lyndsey, what do you want to say to other teens who have epilepsy? What do you want them to know? I just want to say that epilepsy can be both a blessing and a curse. It can be a curse because, well, you have epilepsy and you have seizures. And t can be a blessing because you have the chance to change other people's lives. I feel very, very proud of helping to pass this new law. And I couldn't have done it without my family.
The stories of people with epilepsy fuel the fight to End Epilepsy. The epilepsies are a complex spectrum of brain disorders and diseases that are best understood through the personal stories of people affected by epilepsy and their families. That's why sharing stories is at the core of our Let's Use Our Brains to End Epilepsy campaign. Our ambassador profiles will roll out over the coming weeks, one each week to begin to tell the stories of epilepsy -- the trials and triumphs which fuel and inspire the fight to End Epilepsy.
Coming soon! Whitney is using her brain to End Epilepsy by raising awareness and understanding.
Coming soon! Sally is using her brain to End Epilepsy to educate people about the risk of death from epilepsy.
Coming soon! Paul is using his brain to End Epilepsy by talking about his epilepsy and doing things he never thought he could - including climbing Mount Whitney.
Coming soon! Jared is using his brain to End Epilepsy by surfing to raise awareness and money for the cause.
Coming soon! Dr. Olvera is using her brain to End Epilepsy by helping patients with seizures find the right treatments.
Coming soon! Mia is using her brain to End Epilepsy and advocate for her daughter Bliss and others.
Coming soon! Aryn is using her brain to End Epilepsy by standing up for herself and owning her experience as a young woman with epilepsy.
Coming soon! Veronica is using her brain to End Epilepsy by walking in her son’s memory each year at the Nationwide Walk to End Epilepsy.