Personal Stories
SHARE YOUR EPILEPSY TRUTH
Epilepsy is a complex condition which takes many forms. Not only does the diagnosis, cause, and treatment plan vary from person to person, but the impact epilepsy has on individuals, families, and communities is felt in a wide variety of ways.
Greater public knowledge and understanding about epilepsy will lead to more research dollars aimed at finding a cure.
Determined to follow his dreams, Roi earned his bachelor’s in the Philippines at age 20.
Renewed lease on a seizure-free life.
Parents, this journey to help your child is a marathon.
Intractable: adjective; not easily relieved or cured
I made it through surgery with a renewed hope of having a better quality of life.
I want to know that I’ve done everything I could to keep my daughter alive and living a full life.
I want more answers and someone who will listen to me.
When we believe in a cause worth fighting for, then we can do anything.
We need more research and a faster path to treatments so that people can get back to their lives.
Daniel is hopeful and once again on track to realizing his dream of becoming a teacher.
We have to keep fighting for Hadley and for her future.
Tony and Irina chose to become involved with CURE Epilepsy to help support research in epilepsy genetics.
I learned to adjust and I kiss the ground I walk on to have a second chance.
I fight every day as Bradley's advocate alongside his dad.
When faced with a challenge Anthony does not shy away, he accepts the challenge and conquers it.
We work through the negatives, relish on the positives, and do what we can to help Max and other families
Because I had epilepsy. The high school called me an obstruction for the classroom
We learn differently, but learning keeps us going.
I hear you, I see you, and I love each and every one of you.
Is today the day I will wrap my arms around my mom in heaven?
I’ve had one of the rarest types of epilepsy ever since I was 3 years old.
My brother has epilepsy, and I don’t remember a time that epilepsy hasn’t impacted my family
I had to quickly come to terms with the fact that Maddie has many special needs
When Eva began experiencing seizures, I was scared, confused, and could see how difficult it was for her.
Epilepsy is Merciless
Epilepsy is Suffering
Epilepsy is Misleading
Epilepsy is Missing Out
I’ve always known about the struggles people with epilepsy face because they were part of my childhood
I am now the proud Mom to one medically complex child with drug-resistant epilepsy
I still had trouble understanding the way my seizures affected other aspects of my life
Epilepsy has changed my life. It has affected my relationships and my abilities.
I was angry and confused at the world as to why this was happening to me
Embracing my diagnosis of epilepsy was something that I struggled to cope with.
I met an incredible neurologist who helped me see that I am much more than my diagnosis
I know what my body feels like normally, and what it feels like now.
Sometimes I wish I was normal but I know God put me here for a reason.
I’ve experienced caring for a child with epilepsy firsthand, and this disease must be stopped.
I was made to feel punished, shamed and degraded by being arrested for a medical condition.
Memory loss for me is the biggest challenge that epilepsy presents me daily.
I found many keys to not allowing seizures to happen again.
Epilepsy may affect my life, but it doesn’t get to determine how I live it. I do!
Paul's Law establishes seizure safe schools in New Jersey. He is a true hero!
Playing my favorite music has made a tremendous difference for me as a regular treatment for my epilepsy.
Although motherhood is not what I pictured, it is precious and profound.
Erin was a beautiful person and perfect daughter. I miss her beyond belief.
"I can show that living with epilepsy is what you make of it, even as a single parent."
"Later that day I decided that I would not let epilepsy control my life."
"So, keep smiling and keep fighting: it is a practical mindset and way of life."
Reagan has become an advocate not only for herself but for other children.
Jack is an incredible person who constantly inspires us with his intelligence, strength, and kindness.
I kept asking for help because I knew something was really bad.
As a newly single mother, I had to make a decision last year about what I was going to do with my life.
I live in fear daily, as do most people with epilepsy. However, I succeed as a well-respected nurse.
My experience at MGH catalyzed my decision to major in Neuroscience in college.
It is important for people with epilepsy to know that they aren’t alone in this fight.