Personal Stories
SHARE YOUR EPILEPSY STORY
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. 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. We need to Say the Word #SayEpilepsy.
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
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.
Epilepsy is Merciless
Epilepsy is Suffering
Epilepsy is Misleading
Epilepsy is Missing Out
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.
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.