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.
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.
I may not suffer from epilepsy myself, but I know all too well the day-to-day struggles accompanying it.
I want to go that extra mile, as my doctors did for me, and be an agent of change.
Over the last two years of living with epilepsy, I think I’ve accepted it.
Epilepsy is Merciless
Epilepsy is Suffering
Epilepsy is Misleading
Epilepsy is Missing Out
Charles had days with hundreds of seizures, and our family life revolved around caring for him.
If I was going to be truly “free” in my new normal, I needed a village to support me.
I was diagnosed with absence epilepsy as a 4th grader. My sister was diagnosed a few years later.
Love and take pride in who you are. ?
I finally figured out that I could no longer sit silent.
Zach is now 26 years old and has thankfully been seizure free for almost 9 months!
Michael is a teenage baker, business owner, social entrepreneur and food justice advocate.
My invisible disability is epilepsy which has been an active part of my life for 33 years.
I use my baking skills to raise donations and epilepsy awareness.
It's heart breaking to know at such a young age that having a baby might not happen.
Letter to My Rookie Self
“Epilepsy” is my “Invisible Disability” and it became a part of my life 32 years ago.
I watched my son go from an energetic, gregarious toddler to having over 1,000 seizures in a single day.
My son is now 24 and has had 4 years stolen from his adult life.
One day I woke up and decided I wasn’t going to let epilepsy control my life anymore.
Rob at Epilepsy Awareness Day at Disneyland
Kaitlin at Epilepsy Awareness Day at Disneyland
Jessica at Epilepsy Awareness Day at Disneyland
When I was about 13 months I had a convulsion in which the doctor thought I was going to die.
I am accepting that I have epilepsy, and I want to make a change.
Epilepsy teaches you to be grateful for every good day and also that life is fragile.
I have had epilepsy since birth as part of my syndrome, Schizencephaly.
Mel's Story
"Today I have been seizure free since June 10, 1998, and still going strong."
"I’ve been on almost every medicine I know of hoping to find a better treatment and maybe be seizure free
"Without her epilepsy, she never would have discovered her passion and skills for neuroscience or her pas
"Epilepsy has been a part Kelli's life for as long as she can remember. "
Sara's Story