Personal Stories

Photo of young man with dark hair smiling at the camera wearing a yellow t shirt.

I was diagnosed with epilepsy when I was a baby.

Nathan

A woman smiles next to her dog in a parking lot outdoors.

I had a seizure, along with traumatic brain injury from it.

Joanne

A young woman with epilepsy smiles for a selfie in a hospital bed wearing EEG headband.

Not every storm lasts forever.

Emily

A man wearing a kilt smiles at the camera in front of a brick building.

Nearly 10 years later, and we still don't know why I have seizures.

Cooper

A little girl wearing a floral dress and sun hat smiles at camera holding candy to her mouth.

Despite the challenges, Lora’Ann has defied the odds.

Lora'Ann

Photo of woman standing in front of a house wearing red shirt and a white cardigan smiles at the camera.

I’ve turned pain into purpose.

Natalie

Cooper has to work ten times harder for skills than other children—but epilepsy can’t keep this kid down.

Cooper

One of her biggest dreams is to drive someday.

Mariah

Photo of a young woman in graduation sash holding flowers and smiling.

Hannah was diagnosed with epilepsy during her junior year of high school.

Hannah

A woman is smiling at the camera wearing a red shirt.

I've been having seizures for 37 years now.

Jennifer

I’ve learned to try my very best to be aware of my condition.

Curtis

Photo of boy, Van, with epilepsy rare genetic mutation epilepsy research personal story

Despite the challenges, my baby boy smiled through it all.

Van

I had a seizure due to a fever.

Alexa

photo of child who had epilepsy smiling CURE Epilepsy Personal Story submission

We never really knew, though, that a seizure could take our boy away forever.

Atticus

We go through battles and fight, but we never give up.

Hector

photo of woman with epilepsy for CURE Epilepsy Personal Story

I cannot imagine what my life would be like without the life-altering surgery.

Laura

I have epilepsy, but it doesn’t define who I am as a woman.

Saida

My processing became more difficult, and my mental state became saddened.

Olivia

It wasn't just a shiver or a shake; it was a full-blown storm. Six minutes that felt like an eternity.

Anny

photo of boy with right temporal lobe epilepsy smiling

Minutes felt like years in that waiting room.

Zack

Calvin was diagnosed with Doose syndrome, a rare form of epilepsy causing myoclonic-atonic seizures.

Calvin

A seizure could happen at any moment.

Liam

Manuel continues to surprise us—his family and friends—because he does not give up.

Manuel

A cure would give me back control, allowing me to embrace life's moments without the shadow of seizures holding me back.

Arrey

With each passing day, he reached more milestones—first physical, then cognitive. It felt like he was waking up from a fog we had been trapped in for so long.

Aditya

Frequently, I think about what Calvin would have been like had there been a cure for epilepsy. Perhaps he would have been able to talk (he said his first and only word, “mama” before his first seizure).

Calvin

She enjoys music, hiking, her silly sisters and school!

Coral

I had my first seizure at 9 years at first the doctors thought it was from a high fever after an illness, but a few months later I had another one.

Olivia

This photo is me doing stand up comedy. Because of epilepsy I have found a way around it by making jokes and making people laugh. Epilepsy doesn’t just have to be sadness you can use it to be an influence and be closer to others.

Matt

We have accepted that Valter is different, but we are constantly living with the grief that our son never will be as other healthy boys.

Valter

I'm always told what I can't do.

Patricia

I proved everyone wrong.

Jayce

I encourage you all love like Dylan.

Reggie

I was unable to work for several years due to the severity of my seizures and medication side effects.

Stephanie

In 2018, Connie was diagnosed with Stage 2 brain cancer and epilepsy. Her medical diagnosis required that she place her lofty academic goals on the shelf and focus on simply getting well physically.

Connie

At the tender age of 7, my life took an unexpected turn. I was diagnosed with severe ulcerative colitis, a chronic illness that would shape the course of my existence.

Josh

Photo of woman wearing green shirt smiling at camera in front of a greenery background.

As a foster parent to medically complex children, I have cared for several children with epilepsy. I am now the proud Mom to one medically complex child with drug-resistant epilepsy.

Kirston

I was diagnosed with epilepsy in 2006 and since then my life has never been the same. I have felt more shame than I ever thought possible.

Kristen - 2020 Educational Enrichment Fund Scholar

Those two seizures, knock on wood, have been it for me.

Matt

I had a focal seizure in a meeting at work

Andy

I had a grand mal seizure going down the stairs.

Caleb

I used to say & think epilepsy seizures controlled my life. But after having 3 beautiful children, that changed.

Cheryl

Jack began experiencing tonic-clonic seizures – forcing him to medically retire from his beloved career as an infantry officer in the U.S. Marine Corps.

Jack Somers

At age six, he was diagnosed with Lennox-Gastaut syndrome.

Nathan

The minute he arrived into this world we adored him.

John

I want to be an inspiration to others to fight and not give up.

Elyssa

At 9 years old, I had surgery and have been seizure free for 5 years!

Alta

So far I’ve been seizure free and my device has been stopping a seizure every 8 or fewer minutes.

Kendy

We met epilepsy nine years ago. We were on holiday, walking on the beach. It appeared out of nowhere.

Leonardo

No explanation was given as to why I have epilepsy but it ended my military career.

Keoni

The keto diet lowers the amount of carbs you eat and teaches your body to burn fat for energy instead. Now this keto diet is working for Avery.

Avery

I may have epilepsy, but epilepsy doesn’t have me! I am so proud to be a warrior and fight every day for the epilepsy community.

Mariah

I am 60 and am living my life seizure free for 10 years! I can drive now. I am positive proof that sometimes there is a way!

Susan

Keep doing what you are doing, putting one foot in front of the other and continuing to push forward. I believe you will find the tools needed to help your little warrior.

Harra

Determined to follow his dreams, Roi earned his bachelor’s degree in the Philippines in 2016 at age 20 and then moved to the U.S. to study music.

Roi

Cormac’s tough exterior hides the challenges of living with a chronic health condition that could come roaring back without notice.

Cormac

When I was twenty-three years old, I underwent five hours of brain surgery. I woke up knowing that I made it through surgery and with a renewed hope of having a better quality of life.

Amy

I admire Virginia’s bravery, curiosity, and compassion, and I can’t wait to see what she does and where she goes.

Virginia

During this journey I have learned that when there is a purpose bigger than ourselves, when we believe in a cause worth fighting for, then we can do anything.

Shaunik

I don’t know why this happened to Hadley and to our family. And, I don’t know when this will end, if ever, but I do know we have to keep fighting for Hadley and for her future.

Hadley

Though there are still many unknowns about the role of genetics in epilepsy, these tests and databases can help advance progress toward treatments for people like Ellie and, ultimately, a cure.

Ellie

I learned to adjust. I kiss the ground I walk on, to have a second chance.

Francine

When I was 16 yrs old I had temporal lobectomy.

Gillian

What we want is a seat at the table- the regular table.

Gerene

Despite my epilepsy, I kept pursuing an active life when I met my caring and wonderful husband.

Wendy

When someone informs me I should NOT participate in a situation due to my “epilepsy”, I immediately take note “this human being obviously does NOT know me”.

Kelly

I’ve had one of the rarest types of epilepsy ever since I was 3.

Chloe

a woman with braids and a white sweater smiling

Sometimes I wish I was normal but I know God put me here for a reason.

Aminata

I fight every day as Bradley’s advocate alongside his dad.

Bradley

I try not to let my restrictions get in the way of daily life.

Megan

Woman with epilepsy laying in hospital bed for an overnight EEG

My epilepsy does not define me, but it is a huge part of who I am.

Kiley

A brother's experience with epilepsy inspires his sister's career in biology and neuroscience.

Rachel

I cannot stop the seizures, I cannot control the side effects, I cannot protect her from epilepsy – but oh yeah, I can be a voice, I can share my story as a parent, I can do what I can to raise funds. I can advocate for her.

Nora

A little girl facing away from the camera, fascinated by fish at the aquarium.

I am accepting that I have epilepsy, and I want to make a change. I want to help raise awareness and break the stigma that surrounds epilepsy.

Kajal

“Rachel, your sister has epilepsy.” I clearly remember the day my mom shared this with me.

Rachel

Everyone who knows Sean Matthew Rabus loves his ear-to-ear smile and infectious laughter.

Sean

To see how much her physical therapists positively impacted Maddie’s physical and emotional well-being, I knew this was the career path I wanted to pursue.

Rachel

I underwent surgery in 2017 and have been seizure-free since then.

Rashetta

Back in the day, bike helmets were not even a thought.

Marc

We left the hospital with a plan of care for Ella but not a cure. The plans and dreams I had for her were changing, but my love for her stayed constant.

Kristin

Being a caretaker of a child with epilepsy is heartbreaking and the hardest thing I’ve ever done. I want to help other families who are walking this same path.

Lindsay

I became interested in campaigning for change politically after learning more about our healthcare system through being a patient for so many years.

Oliver

Being able to spread awareness and advocate for people with epilepsy within my community has been incredible, and I know I will never stop doing this.

Marjorie

Although it is extremely difficult to live with epilepsy, it has given me the ability to identify with a community that feels unheard and marginalized.

Kiara

As a librarian, I want to facilitate better learning and communication about epilepsy among those with epilepsy and throughout the community.

Katherine

Mitchell’s diagnosis led me to study neuroscience in college and toward my career goal: to attend medical school to become a neurologist.

Gwyneth

Overcoming my self-imposed stigmas of epilepsy, while advocating for others with epilepsy, was something I never thought that I would feel so strongly about.

Aubrey

Epilepsy has changed my outlook on healthcare, because it gave me an insider’s perspective of the concerns that accompany chronic conditions.

Gabriella

Epilepsy has changed my life in a number of ways and has shaped me into the person I am today.

Trevor

In the future, I hope to one day work in a state-of-the-art lab where I can study diseases and disorders, including epilepsy, with the intention of finding a cure.

Madison

I want to go that extra mile, as my doctors did for me, and be an agent of change when I am a physician assistant in pediatrics.

Calista

Over the last two years of living with epilepsy, I think I’ve accepted it and come to find some meaning behind it.

Logan

My ambition is to become a physician-researcher, taking the concerns of patients and families from clinic to the lab, to translate clinical and scientific findings into tangible outcomes for patients.

Nathan

There is no cure for my epilepsy, but it would make me ecstatic to help rehabilitate others and give them hope of living in their new normal.

Madelyn

My life with epilepsy, personally, professionally, and athletically, has developed me into a practical optimist, who looks to improve access to medicine.

Maria

I decided that I would not let Epilepsy control my life. I started to research nonstop and change my whole life around.

Alexander

Jack is an incredible person who constantly inspires us with his intelligence, strength, kindness, sense of humor and warmth.

Jack

My goal is to send other students with epilepsy to college with scholarships.

Stephen

The day I was diagnosed with epilepsy was the day that changed my life forever.

Sienna

Rob speaks at Epilepsy Awareness Day at Disneyland in 2019 about his journey with epilepsy.

Rob

Jessica at 2019 Epilepsy Awareness Day at Disneyland; she is the mother of an amazing little girl who was diagnosed with epilepsy at 6 months old.

Jessica

It truly is my assistance dogs (both Zern and Alepo) that are responsible for returning a sense of normalcy in my life and taking away the control that epilepsy had on me and I am truly grateful.

Edward and Zern

My message to families: never lose hope.

Julianne

Without her epilepsy, she never would have discovered her passion and skills for neuroscience or her passion to help others.

Clare

Sara's goal is to be an agent of hope for the epilepsy community, using her platform to tell her story and encourage others to not allow their epilepsy to define nor limit them.

Sara

Epilepsy has been a part Kelli’s life for as long as she can remember.

Kelli

Because of Mariah’s time in and out of the hospital throughout her life, she plans to be a pediatric nurse, specializing in childhood epilepsy.

Mariah

I watched my son go from an energetic, gregarious toddler to having over 1,000 seizures in a single day.

Dominic

For Gillian, a career in health administrator is a platform to bettering epilepsy advocacy. It creates wider access to the resources needed for epilepsy patients.

Gillian

Emma received a diagnosis that she has hemiplegic migraines.

Emma

Emma is eager to be at the forefront of this movement so her sister and others like her can live a life seizure free.

Emma

One day, on a field trip in eighth grade, she dropped into her first seizure.

Ana-Sophia

I finally reached the point when it was time to break through the stigmas and share my experience to provide hope to others.

Jon

My only regret is I never told anyone. I suffered in silence. I could of gotten help sooner.

Susan

I felt called to advocate, to help everyone who has been affected by the same condition.

Tiffany

The brain surgery lasted 13 and half hours. It was very successful.

Chris

Matthew may never have a mom like other moms. I hope that someday soon he will have a mom without seizures.

Susan

I live life with my head held high.

Dan

I have struggled with epilepsy for 34 years.

Michele

I felt like I was limited in what I could and couldn’t do; I felt like I had to be watched all the time; and I really felt like a burden to many people.

Brittney

If you’re reading this particular story right now, you’re probably either a person with epilepsy or a caregiver of a person with epilepsy.

Van

I believe knowledge is power, and one day there will be a cure for epilepsy.

Jennifer

At the encouragement of my family, I am electing to move forward with surgery. I now wait to hear back from the doctors, and I can only hope for the best.

Jeremy

At the same time as losing my license, ability to go out with friends, and my general freedom, I became a burden on the people who loved me.

Samantha

Right now I feel so alone, because the doctors have told me Mirai’s case is rare—so all I can do is try and raise awareness.

Mirai

Jenna passed doing what she loved to do; running. It was her passion.

Jenna

Payton has shown remarkable strength, courage, and tenacity through it all. We learn about what is most important in life because of him, and we don’t sweat the small stuff.

Payton

Do we risk a seizure to increase communication or have a non-communicative child who doesn’t seize?

Owen

We had no idea that he was at risk of losing his life to Sudden Unexpected Death in Epilepsy (SUDEP)—that epilepsy kills tens of thousands of Americans a year.

Chris

Parents should not have to lead their children into operating rooms, knowing they are sacrificing their child’s arm and hand for the mere chance at seizure control.

Julie

She’s a resilient kid, but she needs more than hugs from her helpless parents. She, like millions of other people with epilepsy needs a cure for this devastating disease.

Rebecca

He has taught all of us so much about enjoying the simple pleasures in life, like Winnie the Pooh, Stitch, Dr. Seuss, taking naps, and giving hugs.

Michael

It has been four years since we lost our little girl. At times I miss her so much I can barely breathe.

Elizabeth

Writing this is not easy, but I had to tell Gen’s story; that’s how she would have done it.

Gen

Because Stacy has shown us so much strength and endurance, it has made us push for better solutions for all children with epilepsy.

Stacy

Epilepsy robbed Amanda of her ability to walk, eat, dance, run, sing, be a cheerleader, play with her faithful companion Snoopy, keep up with her friends, or date a boy.

Amanda

As I pray every night for Gianna’s seizures to stop, I also pray for a cure—and for much comfort for the millions of people and their families affected by epilepsy.

Gianna

My mother’s seizures should not have been treated as inevitable, just as her death should not have been viewed as inevitable. In CURE, I have found hope for all patients and family members who suffer from epilepsy.

Wanda

I remember waking up in the ambulance confused and gasping for breath.

Matt

Ultimately, the cure for my affliction is dependent on the funding CURE receives, in order for neurologists to be able to conduct their research. At the moment, my life is on standby.

Erika

At this time his seizure medications are working, I pray everyday that it continues that way. I also pray everyday for a cure for epilepsy.

Ethan

I feel it’s important for people with disabilities to get involved as much as they can with public activities.

John

Calvin is my hero, my little muse, my inspiration and the one who makes me want to be a better person every day.

Calvin

Even though I have epilepsy and a learning disability. I have accomplished a lot of things throughout the years.

Abigail

We have come a long way in that there is a better understanding of epilepsy. With research, awareness, compassion and caring, epilepsy can become a thing of the past…or at least a cure of the future.

Keely

Hopefully one day there will be a cure and we will not have to live in constant fear of another seizure coming.

John

Living with epilepsy is not just a daily burden, but in fact an all-encompassing reality.

Linnea

According to my records, I’ve witnessed 18,737 seizures—a remarkable number even for a medical professional. But I’m not a doctor. I’m a mom.

Savannah

I wish I didn’t have to live with it. But I do, and I do it with the strength of knowing that someday I will find a way to conquer this.

Stephanie

Our sweet Ethan was diagnosed with Infantile Spasms when he was 5 months old.

Ethan

There was no explanation for why I developed the condition.

Valda

Kaleb has taught us what it truly means to have unconditional faith, hope, and love.

Kaleb

By the time I was 17, I was having an average of 25 seizures per day.

James

We understand the heartache and lives that are destroyed by epilepsy and while our daughter has been one of the lucky ones, there is a very scary reality that is constant in our minds.

Sophia

I have come to believe that unless you have experienced it yourself, or walked that path as a caregiver, parent, or significant other, it is very hard to comprehend the full impact of this disease.

Tracy

Every day was a monotonous routine.

Ludy

Michael's diagnosis and seizures changed his life in some ways, but it didn’t change his drive to give back and change the world.

Michael

Epilepsy ended up making Brook a stronger person and taught him to persist and work hard to achieve success.

Brook

Matthew’s fighting spirit as someone with epilepsy led him to the doors of the United States Military Academy.

Matthew's Story

A student who also has epilepsy inspires her teacher to pursue a career in healthcare.

Rachel

Parents of children with epilepsy… never give up hope!

Britt

I was a police officer when I had my first set of seizures.

Matt

Olivia was diagnosed with Aicardi Syndrome, an extremely rare and random genetic mutation.

Olivia

Sudden Unexpected Death In Epilepsy (SUDEP): No one told us.

Andrew

Her brain tumor and epilepsy have been the hardest experiences of her life, yet they have been the biggest blessings in disguise.

Devin

Derek plans to use his prior experiences to pursue a career as a physician assistant and a biomedical engineer.

Derek

Cote hopes to one day donate his time and use his legal knowledge and privileges to protect and provide services to families and foundations that want to cure epilepsy.

Cote

Epilepsy is the second most common neurological disease. For far too long, it has been misunderstood as a treatable, benign condition.

Lauren

Carol realized she needed to share her voice, advocate for those suffering, and show others it’s possible to live a productive life with epilepsy.

Carol

Our lives changed forever that day, and we hope that there is a cure out there for Ella.

Ella

For me, the hardest part of Charlie’s seizures was seeing his eyes. You don’t hear much about the eyes.

Charlie

To all those people affected by epilepsy in some way, do not give up.

Jessica

It’s that face and that smile over all these years and through all the challenges that serve as our source of hope.

Eoin

We hope for seizure-free days and a life for our son without the side effects of treatments. We hope for a cure.

Adam

My heart shattered into a million pieces as I received the devastating news.

Chris

There were days where we could almost forget about epilepsy. Almost.

Bodie

It has been an incredible journey and test of faith, but we fight this disease with everything we’ve got.

CJ

I wish I could have protected him from SUDEP. I wish epilepsy had not taken him from me.

Mikey

Cameron is a reminder that we study SUDEP because it has a real human toll. The people and families who suffer SUDEP are not just a statistic.

Cameron

I often wonder what Pat’s recovery would have been like without PTE.

Pat

Epilepsy takes a lot from you, but on the other hand it gives something to you.

Charles

Thanks to a new and ambitious global genetic database project, families like mine may not have to wait years to find out the truth.

Isaiah

New parents and a brave little boy named Jack rally an entire community to uncover the mysteries of a rare genetic mutation.

Jack

As her parents, we make the absolute best of the times when she is healthy and happy, and we continue to hope for a cure.

Violet

Michelle's ten-year journey through the world of epilepsy has motivated Michelle to become an advocate not just for her son, but also for others dealing with epilepsy.

Michelle

Loving his sister with epilepsy has made Daniel the person that he is today. He wants to make a difference in the epilepsy community until a cure is found.

Daniel

A sibling's battle with epilepsy inspires a career in research and pediatric neurology.

Daniel

Logan is determined to continue advocating for research in epilepsy and spreading epilepsy awareness.

Logan

Ever since my diagnosis, it has been my mission to spread epilepsy and SUDEP awareness—no matter where and what I am doing.

Sasha

Drake's mission and passion is to bring about substantive change in the world for people with epilepsy.

Drake

March 3, 2013 a day etched in my memory forever. I woke early to find Reagan, then 15 months old, drooling, gray and unresponsive.

Reagan

Jaqueline felt powerless in that moment, just like so many others do when confronted with seizures, and has since dedicated her life to understanding this disease.

Jacqueline

Since her brother’s diagnosis, Brianna has watched her family struggle with the financial and physical burdens of this disease.

Brianna

My name is Casey Nunes and when I was 14 I had my first convulsive seizure.

Casey

As a child with epilepsy, he used to wander the halls of Texas Children’s Hospital and admire the doctors on their rounds.

Nolan

By the time he reached 4 1/2, he was seizing every two minutes and no medicine was working. In fact, he was on the maximum that an adult would be taking on two of the four medicines.

Johnathan

I found out at 23 that I have Epilepsy.

Melissa

He was 18, and it came out of nowhere.

Josh and Alexie

Little did I know that October 9, 2013 would be the day my life changed forever.

Tori

With the help of her family, she continued to grow professionally in the political arena and is currently pursuing a Master’s degree in Public Health.

Alison

A mother who struggled with not knowing the answer to her child’s epilepsy and who never gave up.

Jennifer

An individual smiling and holding a drink in a coffee shop setting.

Life took an unexpected turn as my best friend, the soul who filled my world with laughter and shared my deepest secrets, was diagnosed with epilepsy.

Anu

I’m now 25 years old, and I reflect on a journey that began with an epilepsy diagnosis at the age of 13.

Lauren

Sophie watched her little brother battle seizures daily and struggled to find a way to help him improve his quality of life.

Sophie

Our Mission

Why We Exist

Who We Are

Our Research

Our Research Strategy

Overview

Progress

Educational Resources

Epilepsy Basics

Diagnosing Epilepsy

Treatments and Therapies

Seizing Life Podcast

Community

Events

Why Give?

Donate

Other Ways to Support

Discoveries

Funding

Other Resources

Stories from the Epilepsy Community

Dive into inspiring and heartfelt personal stories from the epilepsy community. Explore the journeys of individuals who have navigated the challenges and triumphs of living with epilepsy firsthand.

More Stories Like This