Everyone has a story...

3.4 million people live with epilepsy in the U.S.

Worldwide it’s 65 million.

One in 26 people in the U.S. will develop epilepsy at some point in their lifetime – regardless of age, race, or gender.

A complex disease encompassing many types of seizures, each person with epilepsy is different. A third of the people with epilepsy live with uncontrolled seizures because no available treatment works for them. Many more live with serious side effects from their medication as the price of seizure control.

Yet people living with epilepsy dare to defy their seizures. They dare to live to their fullest potential.

The Power of Shared Stories

And they share their stories to end the fear and misunderstanding that surrounds seizures.

They fight to raise awareness, educate the public, and raise funds to support the development of new therapies and treatments.

They find strength in community.

Share your story. Make a difference today!

Stories of People Living with Epilepsy

Get to know some of the brave and inspiring people who live with epilepsy by reading their stories.

Kristen's Story: Finding the Positive

Kristen shares how a positive attitude and the generosity of others helped her get through a setback in her seizure freedom. Read more.

Hailey's Story: A Humble Marvel Hero

Meet one of Marvel's newest heroes, Hailey Scheinman, president and CEO of the Epilepsy Foundation Kids Crew. Now 15 years old, Hailey has been a fierce advocate for epilepsy awareness since she was little in honor of her twin sister Livy who lives with epilepsy and cerebral palsy. Read more.

Camila Coelho: Sharing Her Epilepsy Story for the First Time

Camila Coelho is a Brazilian-American beauty entrepreneur, fashion designer and founder of her hit namesake label, the Camila Coelho Collection. Camila is one of the 710,000 Latinos in the United States living with epilepsy. She shared her journey with epilepsy with the world for the first time on International Epilepsy Day on February 10, 2020. Meet Camila.

Epilepsy "Rocked Our World': Stephanie and Reagan’s Epilepsy Surgery Story

Meet Reagan and Stephanie. Reagan had brain surgery in July 2012 as a treatment for his seizures which were resistant to anti-seizure medication. He is currently seizure free after his surgery and with ongoing treatment with cannabidiol. Reagan and Stephanie are both huge advocates for raising awareness about epilepsy and volunteer their time with EFTX and with the national Epilepsy Foundation. Read more.

Emily's Clinical Trial: An Opportunity that Made a Difference

Stacy’s daughter Emily started having seizures at 4.5 months old. Since then, it has been a long journey with many doctors' visits, multiple treatments, and a clinical trial when Emily was 7. Stacy talked with Liz Dueweke, manager of communications at the Epilepsy Foundation, about her family’s experience with a clinical trial. Read more.

Veronica: A Life-Changing Experience with a Clinical Trial

Meet Veronica C., manager of foundation relations at the Epilepsy Foundation and a person with epilepsy who participated in a clinical trial. Veronica sat down with Liz Dueweke, manager of communications, to discuss her experience. Read more

Brittany: Finding a Personal Passion in Clinical Trials

Meet Brittany, manager of patient recruitment at Engage Therapeutics, Inc., and a woman living with epilepsy. She found complete seizure control after participating in a clinical trial and is a passionate advocate for clinical trials. Brittany spoke with Liz Dueweke MPH, manager of communications at the Epilepsy Foundation, about her journey. Read more.

Meet Nina: Best of Both Worlds

Nina Mago lives in Uganda and runs the Purple Bench Initiative - Uganda. In 2019, she represented the entire continent of Africa at the 33rd International Epilepsy Congress in Bangkok, Thailand, as a Golden Light Award winner. Learn about her remarkable story of speaking up for people living with epilepsy. Read more. 

Natalie: Angels of Epilepsy

Drawing on the power of the epilepsy community, Natalie B. created a non-profit organization called Angels of Epilepsy©️ to give back. Read more.

What Epilepsy Means to Farrah

Farrah's young daughter lives with two types of epilepsy. When people ask Farrah what epilepsy is, so much comes to mind besides just seizures. Farrah shares what epilepsy means for her family. Read more.

My Studio E Journey

Katelyn B. shares how Studio E: The Epilepsy Art Program helped her gain perspective on her epilepsy diagnosis. Read more.

Why Kerri Walks

In the lead up to the 11th Annual National Walk for Epilepsy, Kerri C. of McHenry, Maryland, shares her epilepsy story. Read more.

Elisabeth & Kim's Story

The magic of "The Nutcracker" brought Kim a miracle for her dancing daughter Elisabeth. Read more.

Kevin’s Story

Kevin Oliver remembers the exact moment he found out he had epilepsy — and he also knows it was years too late. Read more.

Tracy’s Story

The moment you first meet Tracy Estrada-Hiett, you feel as if there is a story. And there is. Read more.

Barbra’s Story

I was officially diagnosed with epilepsy when I was 18, but, in hindsight, I realize I had my first seizures while I was still in high school. Read more.

An Advocacy Journey

Dr. Nikesh Ardeshna writes about the many paths he has taken on his journey to help patients, peers, and legislators understand epilepsy and seizures. Read more.

Sally's Story

"A Family's Journey Through a Clinical Trial," presented at the 2016 Epilepsy Foundation Pipeline Conference


Hannah's Story

Handling Seizures in Public – Grace, Courage and Awareness

Tuesday, May 14, 2019