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.
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.
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
Epilepsy is Merciless
Epilepsy is Suffering
Epilepsy is Misleading
Epilepsy is Missing Out
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 someday. "
"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
"Being diagnosed with epilepsy changed how she sees the world and sees how people with different challeng
"Miriah was diagnosed with epilepsy when she was seven years old, so she has never really known life with
"The condition may have been overlooked during her childhood as the seizures were mild, yet the boundarie
Emma's Story
"Her medical diagnosis required that she place her lofty academic goals on the shelf and focus on simply
"Until a cause and cure are found, Emma's family continues to be at the mercy of this devastating disease
Ana-Sophia's Story
"I finally reached the point when it was time to break through the stigmas and share my experience to provide hope to others."
"I cried when I was told I had epilepsy. I was ashamed for some reason."
"Advocate, educate, and help to seek out a cure. I had to take part in the mission."
The morning after my only child, Matthew, was born, I had a stroke. To save my life, doctors performed emergency brain surgery. I thought my stroke was horrific. However, nothing could have prepared me for the horror I would experience
Chris's Story
Epilepsy hasn’t stopped me from smiling, but no one should have to live with epilepsy.
"Epilepsy can affect anyone of any age, and globally, the burden of epilepsy is HUGE."
Dan's Story
"I have helped a number of others out to help with their seizure problems but I can’t help myself out."
"I did not let epilepsy define me, I refused to give up, and I hope I helped others along the way."