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.
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
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Tell us about your connection to epilepsy and the Epilepsy Foundation? My name is Sally Schaeffer and I'm the director of the Epilepsy Foundation's SUDEP Institute. More importantly, I'm a mom of three. One of my children, Lydia, had a rare, nocturnal epilepsy and died in her sleep from SUDEP on Mother's Day 2014.
Tell us about your daughter Lydia. My daughter Lydia was born in April of 2007 with a rare chromosome disorder. And with that rare chromosome disorder came the diagnosis of epilepsy at 18 months. We were able to control her seizures. However, in June of 2013 we were told that she had a very rare nocturnal epilepsy. She was actually seizing in her sleep. Over 80 percent of her non REM sleep she was seizing.
As a mother, how did you advocate for her? Before Lydia died, I was an advocate for her in the educational space. Also in the medical area because she was very medically complex. Lydia's Law was passed in the State of Wisconsin in 2014. Lydia died on-- in May of 2014, and I continue to be an advocate for her for therapeutic treatments, as well as educating people about SUDEP and most of all about grief and loss.
What does SUDEP stand for? SUDEP is Sudden Unexpected Death from Epilepsy in someone that is otherwise healthy who passes.
What do you want to tell other parents of children with epilepsy? What's important for them to know? I would tell parents and caregivers that they need to make sure that they find the best care and ask the questions that need to be asked, even the tough ones. Like what is my risk for SUDEP? How can I eliminate SUDEP from happening or prevent SUDEP from happening?
Can SUDEP be prevented? The question of can SUDEP be prevented is a really tough question. I think we all need to be empowered and have the education and knowledge around our own epilepsy or the individual who has epilepsy so that they can ask the right questions to their medical professional to lower their risk, to make sure they're taking their medications or following their therapeutic treatments, getting sleep, stressing less, doing some things to lower your risk.
What is the SUDEP Institute? The SUDEP Institute is a program within the Epilepsy Foundation founded in 2013 with a focus on bringing awareness and education to the topic of SUDEP. We are also working to drive research to eradicate SUDEP so that no one dies from this. And we also want to support those that have lost loved ones. The SUDEP Institute is here to help the bereaved and support them in whatever way they need.
How are you using your brain to end epilepsy? I'm using my brain to end epilepsy by sitting here today, by working with top neurologists around the country and the world to drive research to end SUDEP, to talk to neurologists, epileptologists and practitioners to let them know they need to talk about this with their patients. I'm using my brain every day to bring awareness and let people know that SUDEP is real and it is happening and people are dying from epilepsy. And we need to make it stop.
What motivates you to continue in your advocacy and support for people with epilepsy? What motivates me on a daily basis is that my daughter was brought into this world with a purpose. And she was taken from me with a purpose. And my passion for advocating and educating is me turning my passion into purpose. There's a reason she lived and there's a reason she died, and that's why I'm here today.
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.
Juno, tell us about Nehe's first seizure. Juno : There was a time when he was having anywhere from 20-100 seizures a day. One thing I remember is the way he’d reconnect to reality. He'd tell me "I love you dada”.
Nehe, why do you think you'd say "I love you dada"? Nehe : Because that's the only word I mostly remember.
What kind of seizures did Nehe have or does Nehe have? Juno : Most of the time grand mal seizures. They'd be anywhere from 1-2 minutes, maybe 4-5 times they lasted more than five minutes.
Juno, what goes through your mind when this happens? Juno : As a parent, we tell our kids we’re superheroes. We'll take care of them. We'll protect them no matter what. When they have seizures, you're there but you can't do anything. If anyone has a seizure you just have to let it take its course and just make sure they're safe. As a parent watching your child go through that is heartbreaking. You just hope that he wakes up and remembers you.
Juno, what's the worst part about epilepsy? Juno : We'll always worry about him because even though he's been seizure-free for 2.5 years now, we know it's something that can come back. At some point he's going be driving and doing all those things and as a parent that's just a hard thing to deal with.
Tell us about how the Keto Diet Therapy has helped Nehe. Juno : We discovered the diet through a forum with the Epilepsy Foundation. I think he was on keto for about six months with medication, then he became med free and it was just straight keto, no more seizures. Once we found keto, I left work. I've been home for 4 years taking care of him. I feed him every day. He eats by the gram. The greatest gift that we’ve had from epilepsy is the bond that we built.
How has the Epilepsy Foundation helped your family? Juno : The Epilepsy Foundation was our greatest ally. We had the best treatment, the best opportunities. Children's Hospital's been great to us. We found the keto diet through the Foundation.
What would you say to someone who doesn't know anything about epilepsy? Juno : I would find your local Epilepsy Foundation - if it had not been for the Epilepsy Foundation we would be lost. We always felt like we were home. You weren't being judged. Everybody was going through the same things. We'd go to camp every year. You'd meet new people. You need to be part of something like that.
How old were you when you had your first seizure? Whitney: I had my first seizure when I was five.
Do you remember your first seizure? Whitney: No, I just remembered my mom asking me, "Whitney, do you know what just happened?" Because I just, like, stopped talking in the sentence that I was trying to say.
What kind of seizures do you have? Do you know what they're called? Whitney: The kinds of seizures I have are absence seizures.
And what happens? Whitney: I will stop talking if I'm talking to someone like my mom or my dad. So I just blank out and I'll forget what I was saying or what I was talking about.
How many absence seizures did you used to have each day? I was having about 160 seizures a day.
How do you feel about having epilepsy? What do you think about it? Whitney: I don't really think that it's a bad thing, having seizures. But I don't love having seizures. It just makes me unique. And I have not been having as many seizures since I've taken my medicine. And that has helped me focus more during my classes.
Tell me about your friends at school. Do your friends know that you have epilepsy? Whitney: Yeah but not until the Epilepsy Foundation came to my school. That's when I opened up about having epilepsy.
Tell me about your mom and how she helps you with your epilepsy. Whitney: So she tries to encourage me to speak about it more and open up about it when I wasn't talking really about it. I was really shy about it.
Why is it important for you to tell people about epilepsy? Whitney: Because it will encourage kids who are very shy or don't know what to do about their epilepsy to speak up and tell other kids that they know. If you're afraid of talking about it, the Epilepsy Foundation will help you speak up.
We also talked with Michelle, Whitney’s mother.
Michelle, tell us a little bit about how you learned about Whitney’s epilepsy.
Michelle: When Whitney was five years old, she was having these situations where she would just blank out. She wasn't able to stay focused in school. Her teacher had a lot of concerns. And we'd been seeing this go on for a couple of years. We took her to an eye doctor. We took her to a developmental pediatrician. Nobody could figure it out.
As she got a little bit older it progressively started happening more frequently for longer durations of time. I was starting to get very worried. At her six year physical, I told her pediatrician again what was going on and he said that it sounded like something called absence seizures. And I said, "Seizures? This is not what I think a seizure would be."
We took her in for an EEG and the pediatrician called us immediately after and told us it was definitely absence seizures. And I just started crying. Whitney was in the other room. I called my husband in and we just kind of sat on the bed crying because we weren't sure why this was happening, what was going on, what was happening to our little girl. It was really hard. I cried a lot. Whitney spent about two years in and out of the hospital from the side effects of the medication. And it takes a big toll on a little child's body.
How did you connect with the Epilepsy Foundation?
Michelle: When Whitney was first diagnosed with epilepsy, we just kind of felt lost. We really had no resources. We didn't have any family or friends who had epilepsy. We didn't really have anybody to turn to.
Our neurologist gave us information about the Epilepsy Foundation of Northeast New York. I reached out to them and within two days, I got my first packet in the mail with different events where parents can communicate and talk to each other. It’s been really valuable for my family because Whitney when she was first diagnosed wouldn't share with her friends or with her teachers anything about her epilepsy.
Whitney has now really stepped into this new advocacy role. How did that happen? Michelle: It wasn't until the Epilepsy Foundation came in until she really owned her own story. She felt comfortable and confident to share it with her friends and her friends were really interested in finding out what it meant, what happens when you have a seizure. Whitney was able to educate them based on the information that the Epilepsy Foundation gave her.
One final question Michelle, what do you hope for Whitney? Michelle: I hope Whitney is able to share her story with others, to bring awareness for epilepsy and to do good with her story, sharing her story, sharing what she can with the community. She wants to raise awareness. She wants to raise money. She really wants to help the Epilepsy Foundation. And I think she's going to be a good voice to do that. I think her voice is going to be powerful. And I can't wait to see what she does in the future.
Paul, how long have you been diagnosed with epilepsy? Paul: I've been living with epilepsy since I was 7 years old. Wasn't diagnosed until I was 21. It's been a part of my life for the majority of the time I've been on earth.
What about epilepsy makes you angry? Paul: Took me a long time to come to terms with it. Epilepsy is no longer a negative in my life, but an empowering force that pushes me to excel and do things that I otherwise would not do. The seizure hangover is a real thing. It's painful and it can be debilitating. Most difficult part is the misunderstanding that most of America has about it.
What kind of seizures do you have? Paul: When I was 7 I was in a major car accident and I started experiencing petit mal seizures, disorientation. When I turned 21 I had my first grand mal. That’s the type seizure that I have today.
Do you remember how you felt that first time after you came out of the grand mal seizure? Paul: I was terrified. I remember waking up on the ground and had six paramedics looking down at me. It was a surreal experience - having literally no concept of who I was, what my name was, where I was or what day it was. I had no concept of what was occurring.
When you were finally diagnosed with epilepsy, how did that make you feel? Paul: I was 21, my neurologist diagnosed me with epilepsy and I was terrified and completely ashamed. I’d always believed epilepsy was a stigma. I suddenly found myself having to come to terms with not only the definition that I had heard back as a child, but coming to terms with how I was going to live my life going forward.
What would you tell someone today who has epilepsy? Paul: Everybody has something. I encourage people with epilepsy to really advocate on their own behalf. They need to talk about it with their coworkers, family and friends. The greater the understanding the more accepted and more funding we'll get.
Is there any good part about epilepsy? Paul: I view epilepsy as a motivating factor. Motivation is a big part of my life. I don't really have a bad term to use when I discuss my epilepsy.
What does the term "end epilepsy" mean to you? Paul: Hope. Hope to a lot of people affected by epilepsy. It also helps build awareness around our community so that this disorder is much better understood.
What are you doing to end epilepsy? Paul: When I turned 50 I raised money for the Epilepsy Foundation of Los Angeles by climbing Mount Whitney. I've become more engaged in speaking on the subject. I have a Twitter feed that I use to open a dialogue and conversation. Most people don't understand the disorder. They're confused by it.
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! 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.