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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
65 MillionPeople around the world who have epilepsy
3.4 MillionPeople in the United States who have epilepsy
1 in 10People will have a seizure in their lifetime
1 in 26People will be diagnosed with epilepsy in their lifetime
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Brain-E Quiz #1: Seizures and Epilepsy
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Tell us about the first time you had a seizure.Aryn: My first seizure was when I was five and the only reason I remember this seizure was because the paramedic let me play with his flashlight. But they didn’t think anything of it other than it was just a febrile seizure.
What’s a febrile seizure?Aryn: My temperature was 103. And I had a seizure with my baby sitter. Then my next seizure was when I was seven and that was also febrile seizure. I was at my cousin’s track meet and it was really, really hot and when I got into the car I laid down to take a nap and I woke up in an ambulance.
You’re an athlete I know. How did epilepsy affect your participation in sports?Aryn: When I was 12 years old I was playing soccer and I was goalie and it was a penalty kick and I was so ready for it. I loved being goalie. And the ball came straight for my head and it knocked me on the ground and I got up. I just shook it off. And I wanted to continue playing the game and then the next thing I know, like, a helicopter comes. I see a helicopter landing on the field and the paramedics are bringing me off the field and into the helicopter. I was air lifted to children’s hospital and I was released the same day.
Was it then that you were diagnosed with epilepsy?Aryn: So after that day, my family started looking for a neurologist and I was diagnosed with epilepsy. That year after that soccer game, every single time I played soccer I would start to have a staring seizure.
What did that mean for you to have epilepsy as a kid?Aryn: Once I was diagnosed, I was incredibly embarrassed. I knew I had seizures so I would just tell people, “Oh, I just have seizures” like it was kind of nonchalant. But then once I was diagnosed, it became real and I became really, really depressed. I lost a lot of friends. A lot of people didn’t really understand. And my friend to this day, Ali, she’s actually one of the only friends that I still have from high school, she told me– and it’s so weird that I still remember it to this day. She was like, “Aryn, if people are– if people don’t accept your epilepsy or your seizures they’re really not your friends. If they don’t feel comfortable being around you then they don’t deserve to be around you.”
How about your sister? How has she supported you?Aryn: She’s been incredible with my epilepsy. I mean I have no clue what I’d do without her. Growing up I loved attention. I would do anything to get attention. But this wasn’t the kind of attention I wanted. And I blame myself a lot for her missing out on special things because of my epilepsy. She’s been incredibly supportive. She goes on all the walks. She explains everything to her friends. She’s– I don’t know, she’s my number one supporter.
So many people with epilepsy have depression and anxiety related to epilepsy. How did you deal with it?Aryn: The depression part was really hard. When I was a sophomore in high school for the second semester, I was actually home schooled because I was having so many seizures at school. Nobody talked to me. The people who I thought were my friends, they–didn’t call. No texts. So, I was depressed because of that. And I was going through a lot of transitions on medications which also brought my mood up and down. And one thing that helped me a lot was the Epilepsy Foundation, because I found kids who were like me and who had similar experiences. I honestly don’t know what I’d do if I wasn’t a part of this organization.
What’s the worst part about epilepsy?Aryn: The worst part about epilepsy would definitely be the fact that there is no cure. You can do as much research as you want, but it could get you nowhere. The only thing that we know is it’s probably in my front left lobe based on everything that’s happened. But we don’t really know where it is. We don’t really know if the medications I am taking are going to last forever. It’s unpredictable.
What does the phrase End Epilepsy mean to you?Aryn: The phrase End Epilepsy. Hmm. I think the phrase End Epilepsy means what it says. End this– end it.
What would you do to End Epilepsy?Aryn: I don’t think that people talk about it enough. And I’ve found a lot of people who do have this condition don’t really speak about it, which is very interesting. It kind of makes me sad they’re embarrassed, like I was. And I feel like if more and more people came together and talked about it then maybe something bigger would happen and we could do more.
What would you tell a girl who’s 12 who was just diagnosed with epilepsy, what would you say to her?Aryn: There’s nothing to be embarrassed about. I have this medical bracelet and my mom got it for me when I was fifteen. And it was the most embarrassing thing in the world. Like who wants to go around wearing a tag with your parents’ phone numbers on it and it says that you have seizures?
But after I got over the fact that epilepsy is nothing to be embarrassed about, I wear it all the time now. And also I got to pick out a design with a symbol on it. I chose an infinity sign and now everybody compliments me on it. They’re like, “I love your bracelet. I love your bracelet.” But they don’t see the medical part under it. And that makes me happy, in a way, because it’s– it’s like an infinite journey. I don’t know. I don’t know. It sounds a little cheesy, but in my mind it’s like this journey is not ever going to end within myself.
Is there anything that is good about epilepsy?Aryn: I think the only good thing that I can think of is that people– how do I say this? The only good thing that I can think of is epilepsy is a community. So people fit in somewhere. So it’s somewhere that people who may feel like they don’t fit in will fit into. Like any other community. And you have breast cancer community, you have AIDS community, and we have an epilepsy community, we have a support system too.
Tell us about Bliss and how you learned about her epilepsy?Mia: Bliss was diagnosed with a rare brain disorder called polymicrogyria. And we knew that at some point she would have a seizure. We just didn’t know when.
And when did she have her first seizure?Mia: Bliss had her first seizure when she was 18 months old. We were actually scheduled for a doctor’s visit the week prior, but I made a scheduling mishap and happened to go in earlier. And the doctor happened to be able to see us. And she had her first seizure at that visit. So maybe it was god with us. I’m sure it was because I don’t think that I could have handled it without her doctor present.
We were sent home. And then she ended up having another seizure and another one. We went back to the hospital. And she just kept clustering. She had a few more that night.
Bliss has other conditions to contend with as well?Mia: She also has cerebral palsy. It’s a condition that also comes with the polymicrogyria – epilepsy, cerebral palsy, developmental delays, speech delay, feeding delay. Epilepsy, by far, has taken me by the most surprise.
Why is that?Mia: The reason why epilepsy has taken the most toll on our family is because you just never know when it’s going to happen. You don’t know what it’s going to look like. You don’t know who she’s going to be with. You don’t know if people are going to be equipped to handle the situation. And it’s scary.
When Bliss has a seizure what goes through your mind?Mia: The last seizure she had was a 15-minute grand mal seizure and we were still really learning about it. I didn’t know what to do. I kind of panicked and I realized that panicking wasn’t going to help in that situation. So, I quickly got calm. I put her in a safe place.
And I started timing the seizure. After five minutes I gave her her rescue meds. And it didn’t– she didn’t come out of it right away. So it was really, really scary.
What’s the worst part about epilepsy?Mia: The worst part about epilepsy is that you can’t control it. There’s nothing you can do in that moment to help your child. You feel helpless. You have to ride it out and just hope that, you know, once it’s all done and over with that she’s safe and healthy and can recover quickly.
Is there anything good about epilepsy?Mia: I’ve, thankfully, have come across a wonderful community and I’m forever grateful for that because I have been so in touch with the Epilepsy Foundation and I feel safe. I feel empowered. I feel educated. And because of that, you know, it’s helped tremendously.
What would you say to someone who doesn’t know anything about epilepsy?Mia: I would say that you should learn a lot about epilepsy because it can happen to anyone, at any moment. And it’s always best to be prepared to help someone because you can save a life.
And what would you say to a parent who’s just discovering that their child has epilepsy?Mia: I would say to a parent who’s just discovering that their child has epilepsy that it’s important to reach out and know that you’re not alone. When you have a sense of community it just makes you a little stronger and you’re able to kind of bear through it.
How are you using your brain to End Epilepsy?Mia: I’m using my brain to End Epilepsy by participating in the walk and I’m using my brain to End Epilepsy by sharing Bliss’ story.
Dr. Olvera’s Interview:
Tell us about when you were diagnosed with epilepsy.Dr. Olvera: It was 2010, my last year of medical school.
What were the circumstances behind it, what happened?Dr. Olvera: I had a weird episode in the cafeteria at the hospital. I started staring into space, lip smacking and made a jerking movement of my right hand, then I started talking again. I didn’t remember what happened.
What kind of seizures do you have?Dr. Olvera: They are complex partial seizures, which are now called focal dyscognitive seizures. They are characterized by loss of awareness and lip smacking and not being able to register what’s going on during the seizure. I never had loss of consciousness.
What did you have your surgery for?Dr. Olvera: I had a right temporal lobectomy in 2012, two years after being diagnosed with epilepsy. I had surgery because my epilepsy was intractable, so medication was not going be able to control it.
And so the surgery did what for you?Dr. Olvera: Stopped the seizures. However, I continue to take medication. Medication is just to prevent further seizures from happening, either from the surgical area or from the abnormal brain.
And what’s the worst part about epilepsy?Dr. Olvera: The worst part is that it put my life on hold. I was able to complete medical school, but I could not continue my career as a physician. I had to take time off, deal with epilepsy. Couldn’t drive. Had to depend on my parents again.
Is there anything good that’s come out of epilepsy?Dr. Olvera: It’s taught me to be a better physician and it made me change my focus from becoming an OBGYN into neurology.
And how has epilepsy helped you be a better neurologist to patients?Dr. Olvera: I understand what they’re going through, like having to stop driving when they’ve been independent. It’s not a good feeling.
Do you hide that you have epilepsy from some people?Dr. Olvera: No.
What would you say to somebody who doesn’t know anything about epilepsy?Dr. Olvera: I would explain that there’s different types of epilepsy. Types that can be treated, types that, they’ll have intractable epilepsy for many years and they can try to control it with medications. There are ones that will develop later in life.
And how would you describe epilepsy?Dr. Olvera: It’s a misfiring of the brain. Our brain is like a computer. When our computer starts going in overdrive it sort of needs to shut down. That’s what a seizure is. You have to hit the restart button and then you can function again.
What are you doing to end epilepsy?Dr. Olvera: I’m using my brain to end epilepsy by creating awareness and by being the best neurologist I can be.
Jared what kind of seizures do you have?
Jared: From grand mals down to petit and absence seizures.
When did you get your first seizure?
Jared: When I was 17 on the way to my college freshman orientation. Woke up and I was surrounded by paramedics and my mom. That wasn’t very comfortable.
Tell me how you felt when you learned you had epilepsy.
Jared: I was diagnosed in the ER and I was confused by the diagnosis. My concentration was on focusing towards my goals and my plans and my dreams for college.
I learned that my seizures were related to stresses and lack of sleep. Eight hours of sleep was necessary. Practicing yoga and meditation to take as much stress away.
College is stressful. Do you think had a role in your first seizure?
Jared: I had brain surgery five months ago. They pulled out what’s known as focal cortical dysplasia. It’s an abnormality I was born with. I had concussions in high school and was about to start college. There’s a possibility those might have played a role in activating the focal cortical dysplasia.
What would you tell somebody about epilepsy?Jared: I try to help educate about taking care of someone who’s having a seizure. It’s not a common occurrence for everyone, even though one in 26 people have epilepsy. The ability to correctly and comfortably take care of someone who’s going through a seizure is an important factor.
Is there any good parts about epilepsy?Jared: I see every challenge I face as an opportunity. I remember my first appointment with my doctor and I told her, “Sorry, I’m going to keep surfing. You want me stress-free, I can’t be salt-free.” She told me that I can’t drink on my medication. My reply was that I’ll have a great excuse to leave every party early so I can wake up and surf the next morning. I found the opportunity that epilepsy has created with its challenges was to open more time for surfing or more time for connecting with friends and people abroad.
How has the Epilepsy Foundation helped in your life?Jared: I learned how to better live my life and protect my health, and connecting with others who face the same challenges. It created a great network of friends who I can reach out to at any time and who reach out to me consistently as well.
What things do you do to help end epilepsy?Jared: I consistently work with social media to share my story, from having been diagnosed, going through many bad episodes, and then eventually ending with the brain surgery. I pass along my contact information throughout the foundation and on social media so people can reach out and help broaden the network of both support and friends. I also write articles, write blog posts and do podcasts with some bigger networks and bigger publications to continue to broaden the effort of awareness.
I’m using my brain to end epilepsy and show the world that even though I have epilepsy I can still surf daily.
Do you hide that you have epilepsy from some people?Jared: No.
What has surprised you most about yourself on this journey?Jared: What’s surprised me the most about myself would be how– how strong I am. That’s what my family says, that I’m so strong. I sometimes I feel like I’m not. But — I’m starting to believe them.
And how would you describe epilepsy?Jared: It’s a misfiring of the brain. Our brain is like a computer. When our computer starts going in overdrive it sort of needs to shut down. That’s what a seizure is. You have to hit the restart button and then you can function again.
What are you doing to end epilepsy?Jared: I’m using my brain to end epilepsy by creating awareness and by being the best neurologist I can be.
Tell us about your first seizure.Lyndsey: 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?Lyndsey: 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?Lyndsey: 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.Lyndsey: 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?Lyndsey: 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.
Tell us about the first time you had a seizure.Maribel: In the beginning it was just blackout seizures. Then I started getting grand mal seizures. It was very difficult. People would think I was just hallucinating or on drugs. One time I had a bad grand mal seizure and a police officer helped me.
When you’d come to, was there anyone around you?Maribel: People would stare, leave me on the ground and walk away.
What kind of seizures do you have? Do you know what they’re called?Maribel: The kinds of seizures I have are absence seizures.
What would you like to say to the people who walked away?Maribel: Not everybody you see on the street is on drugs or is an alcoholic, some are just having seizures or other medical conditions. So just please try to help people out.
Did you take medication for your seizures?Maribel: They started giving me new medication but it was not working on me. That’s when they suggested a surgery.
Tell us about your surgery.Maribel: I did the surgery in 1995. I was the second person in the world to have it, so I was a test. The surgery controlled a lot of my seizures, but with side effects. Aphasia, loss of speech and writing. Bad memory. Loss of hair, it didn’t grow back. Weight gain.
That was 20 years ago. Have the seizures been better?Maribel: 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?Maribel: I’ll take medication for life, but I don’t get seizures except maybe once a year.
What do you want to say to someone with epilepsy?Maribel: Don’t be embarrassed because you have epilepsy and you have seizures. You can still achieve your goals. Don’t stay home and think that epilepsy is going to stop you from living your life and enjoying it every day.
What was the worst thing about having epilepsy?Maribel: When my bladder went out on the streets after a seizure.
Is there anything good about having epilepsy?Maribel: It has made me a stronger person. I’ve been able to live my life and show other people they could do the same thing.
And how are you using your brain to end epilepsy?Maribel: I’m using my brain by telling people a lot of us have epilepsy. Just because I look normal, I could have a seizure any time. Anybody could develop epilepsy, no matter what age.
Do you wish that more people would speak up?Maribel: Yes, because it took me years to speak up about epilepsy. I wish people would speak up and let other people know that we’re just normal people and that we need help.
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.
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.
Saber, how would you describe what you do for a living?Saber: 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?Saber: 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?Saber: 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?Saber: 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?Saber: 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?Saber: 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.Saber: 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?Saber: 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?Saber: 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 connection to epilepsy and the Epilepsy Foundation?Sally: 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.Sally: 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?Sally: 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?Sally: 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?Sally: 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?Sally: 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?Sally: 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?Sally: 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?Sally: 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.
You lost your son Gabriel to SUDEP. Can you share your story and Gabriel’s story with us? Veronica: Gabriel was 16 years old when he was in a car accident. I really didn’t know how bad the injury was till we got to the hospital and they had to remove the front part of his skull to relieve the pressure from his brain as it was swelling up. He later got an infection in the incision from them opening up his brain. And then he started having a seizure.
What kind of seizures did Gabriel have?Veronica: Grand mal seizures. He also had some where you just stare off. Towards the end before he passed away he was already starting to get that aura around him and he was able to tell me, “Mom, mom, I’m already gonna have a seizure” so I could catch him and lay him down so he wouldn’t injure himself. In 2015, he had a severe seizure that lasted over five hours.
He had to relearn how to walk, talk, do everything. The doctors told me this time he might have brain damage. I always left it in god’s hands and always stayed positive because my son was always positive, no matter what.
When did Gabriel pass away?Veronica: Gabriel’s first seizure was in May of 2011. He passed away on October 14th, 2016.
When Gabriel was diagnosed with epilepsy how did you feel?Veronica: I really didn’t know what it was. We were at home and it was 4 o’clock in the morning and I heard a gurgling sound. I got scared, called 911. I had never experienced that, never seen anyone have a seizure. The doctors told me that he might have seizures, but they never really explained what to expect, that it’s a trembling of convulsion in your body.
How did the Epilepsy Foundation help you navigate care once you discovered that Gabriel had epilepsy?Veronica: We were going to his regular doctor and I saw a pamphlet for epilepsy.
Did the Epilepsy Foundation help you guys specifically?Veronica: I really didn’t get into the Epilepsy Foundation till after my son passed away. Me and my cousin went on the Walk to End Epilepsy in Nov 2016. I met a lot of great people. I was amazed at how many people have epilepsy and it goes unnoticed. I really wish that there was more that we could do to bring awareness to epilepsy.
What would you say to other parents with children of epilepsy? What words of encouragement or advice would say?Veronica: To all the parents or anyone who has epilepsy, stay positive no matter what. Don’t let anyone one bring you down. You can overcome it. You just need to leave it in god’s hands and stay positive. My son always kept going. And parents, always tell your children that you love them each and every day. Take care of them and give them a hug every day.
And please reach out to the Epilepsy Foundation. And be aware of epilepsy. It may be invisible, but it does exist.
How are you using your brain to end epilepsy?Veronica: I try to create awareness. I hope that my son’s story lifts people up and lets them know that they can do it, that they can keep on going.
Both your husband and your daughter have been diagnosed with epilepsy. Tell us your story.Vicky: When my daughter was two years old, I noticed she would space out a little bit when she was communicating with me. One day I saw her running down the hall and she did the same thing and stopped there in her tracks. And that’s when I made an appointment. And I thought, okay, there’s something more here.
Took her to the neurologist– ended up taking her to a neurologist and they did her EEG and it came back abnormal. And it turned out she was having absence seizures. These absence seizures were happening seven to nine times an hour every hour every day. We started her on some medications. It wasn’t good for her so we ended up trying CBD oil treatment. That helped a lot. Now that she’s older, she’s eight years old now, she’s able to take medication. And now the seizures have mostly gone away– I’d say about 70 percent.
About a year after my two year old was diagnosed we were in the car driving back from Las Vegas. I never drive but that time I did because I saw that he was really tired. We were about five miles from the state line and he just started yelling. And I was like, “What’s wrong, what’s wrong?” And he just started shaking and his arms were straight out. I had no idea what was happening. I’d never seen this before.
I knew what an absence seizure was because I’d seen it with my daughter. But I never knew what a grand mal seizure was like until I saw it. I pulled over immediately. He’s a pretty big guy. I couldn’t pull him out of the car. I waved other cars down. They pulled over. Seemed like it was every profession that I needed. A nurse pulled over. A firefighter pulled over. All these people who knew what was going on and they told me what it was. He spent two weeks in the hospital he was finally diagnosed with epilepsy.
It’s the most terrifying thing ever. His seizures are controlled now, as long as he takes his medication and he gets a full night sleep.
What kind of emotions come up for you when you think about your husband’s and daughter’s seizures?
When Manny has these episodes they are– sorry. They’re absolutely frightening. They are terrible. Every time he has one — I picture my life without him. I wouldn’t wish it upon anybody. It’s just horrible. Every time it’s like the first time, every time. They say don’t call 911 if it’s just one, but every time I call 911 because every time it’s like the first time he’s having one. And it’s the scariest thing you can ever witness somebody have, especially some– someone so close to you, your best friend.
And my daughter as well. They’re very different. Their seizures are very, very different. Hers go unnoticed. A lot of people don’t know she has it. But I know that — there’s something happening there in her brain.
What’s it like to be taking care of two people in your family with seizures?Vicky: I had a weird episode in the cafeteria at the hospital. I started staring into space, lip smacking and made a jerking movement of my right hand, then I started talking again. I didn’t remember what happened.
What kind of seizures do you have?Vicky: To take care of two people in my household that have epilepsy, it’s hard. With my eight year old, I’m watching her all day. I’m counting her seizures. I’m tracking them to make sure the medicine’s working right and going in the right direction.
With my husband every strange move he makes I feel like he’s having another one. So the question, “Are you okay” is asked 100 times a day.”
Since all of this happened how has it impacted you?Vicky: It’s draining. I don’t sleep. I’m exhausted. But as long as I know that they’re okay and I know what to do…I’m comforted knowing that I’m educated in what to do. But it’s every day is tiring.
Do you feel like you have a good support system?Vicky: Yes, I do feel like I have a good support system with family and friends. I’m lucky to have my mom lives across the street from me. Anything– any time something happens she’s right there to help me. My oldest daughter, she’s 13 and she knows what to do.
How has the Epilepsy Foundation helped you in all of this?Vicky: It’s helped us tremendously finding other people that are going through the same thing, knowing that we’re not alone and this isn’t something that’s just affected us, that’s affected hundreds of families.
When we go to the walks, I talk to other caregivers and it is an immediate connection. We share our stories and get to see things from a different perspective. Maybe there’s something that I could be doing or, “oh, maybe we should do something– we should play this out.” We share ideas and share all kinds of stuff.
And what would you say to a caregiver or somebody whose loved one, they’ve just found out they have epilepsy, what kind of advice would you give them?Vicky: Advice that I would give someone who is just starting to care for someone that has epilepsy is to know that you’re not alone. It’s scary. You’ll get through it. You’ll get stronger as the time goes by. And just know that there are people out there who want to be there for you and there’s community out there.
What’s the worst part about epilepsy?Vicky: I think the worst part about epilepsy is always living in fear. For me that’s the worst part.
Do you hide that you have epilepsy from some people?Vicky: No.
What has surprised you most about yourself on this journey?Vicky: What’s surprised me the most about myself would be how– how strong I am. That’s what my family says, that I’m so strong. I sometimes I feel like I’m not. But — I’m starting to believe them.
And how would you describe epilepsy?Vicky: It’s a misfiring of the brain. Our brain is like a computer. When our computer starts going in overdrive it sort of needs to shut down. That’s what a seizure is. You have to hit the restart button and then you can function again.
What are you doing to end epilepsy?Vicky: I’m using my brain to end epilepsy by creating awareness and by being the best neurologist I can be.
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.
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.
For information on the Walk to END EPILEPSY and other local events, connect to an Epilepsy Foundation in your area.
Campaign news release. Media features END EPILEPSY. Other END EPILEPSY News. Stats and Facts for Media.
New and improved store with END EPILEPSY merchandise at EndEpilepsy.org/Shop