Personal Stories
SHARE YOUR EPILEPSY STORY
Epilepsy is a complex condition that 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.
CURE Epilepsy has partnered with MemoryFox to collect stories from the epilepsy community to increase public knowledge and understanding about epilepsy. We can’t fund research to find a cure for, raise awareness about, or fight the stigma against epilepsy if we don’t talk about it.
Share your story with the CURE Epilepsy community by uploading a video or writing your story and including a photo on our MemoryFox platform. Unfamiliar with MemoryFox or having issues? Learn how to submit your story here.
Through it all we maintained that my daughter can do anything she wants to do.
I'm in the midst of my second or third try of getting disability.
I am stronger than I believe.
As we were discharged after two hours, ten minutes later he had a full-on 4 1/2-5 minute tonic-clonic.
I would love to see a cure for epilepsy one day.
It’s been a hard life. Hopefully my epilepsy will be cured.
All I want is to overcome this and start living my life again without the worry of having a seizure.
I started to have these stare off moments.
He was misdiagnosed for 6 months.
Never allow anyone to underestimate your capacity for success
I desperately want a cure
10 seizures a day to being seizure free
Seizures occurring nearly every day or every other day
What I was experiencing was not my idea of what Epilepsy is.
I have focal epilepsy
My son needed to take time released epilepsy medicine
It was heart breaking for me as her mom to receive this news.
A Journey of Resilience
I still check on Nora every night
He loved Buzz Lightyear, dancing, dinosaurs, hugs and lots of cuddles.
This is a long story but, I think it's been a great one so far.
One person’s story can make an enormous impact
I wake up every morning feeling so grateful to have made it this far.
Epilepsy talks and when it DOES talk, we just HAVE to listen
Epilepsy is Merciless
Epilepsy is Suffering
Epilepsy is Misleading
Epilepsy is Missing Out
I would walk in the snow literally to get groceries
I had to learn how to transform the pain
Uncontrollable seizures for almost 15 years
Following a 27-hour sedation period, my life was completely changed.
I had my first grand mal seizure when I was 2
We can still smile and be hopeful for the future.
It could not extinguish the light that shines from the core of our friendship
It was then that I had to start looking into ways to manage stress and emotion, on top of taking meds.
Of course, back in the day, bike helmets were not even a thought.
Forced to medically retire from his beloved career as an infantry officer in the U.S. Marine Corps.
He’s one of only 200 people worldwide with a condition known as KCNT1-related epilepsy.
He sees the world through a lens of ease and silliness. He's unafraid and he's just sweet.
I was told that I ran over a curb and flipped my car three times.
Each year we hold a baseball/wiffleball game in Nick’s honor.
At age six, he was diagnosed with Lennox-Gastaut syndrome.
The minute he arrived into this world we adored him.
At the age that most teenagers start to drive, I had my first seizure.
At 9 years old, I had surgery and have been seizure free for 5 years!
My device has been stopping a seizure every 8 or fewer minutes.
We met epilepsy nine years ago. We were on holiday, walking on the beach. It appeared out of nowhere.
I was with a Military Police Unit. Rockets flew over us and we could see and feel the battle ahead.
I am nearly seven years seizure free. But epilepsy impacts me every day.
You could look at me and never know…unless I’m having a big seizure.
I was given the hope that I would most likely "grow out of it." However, it followed me into adulthood.
I am 60 and am living my life seizure free for 10 years! I can drive now.
Now this keto diet is working.
He loves Curious George, Cars, gear toys, and playing with his best friend and little brother, Danny.
Being a kid with epilepsy is not easy. You can’t do other things kids can do.