Epilepsy Alliance Logo
  • About Us
    • Epilepsy Alliance America
    • Leadership
      • Board of Directors
      • National Professional Advisory Committee
      • Staff Members
    • Member Organizations
    • Partner Organizations
    • Milestone Moments
  • About Epilepsy
    • Seizures and Epilepsy
    • Sudden Unexpected Death in Epilepsy (SUDEP)
    • Epilepsy and Mental Health
    • Infantile Spasms
    • Psychogenic Non-Epileptic Seizures
    • CVI and Epilepsy
  • Living Well with Seizures
    • Seizure Response Training
      • On-Demand Seizure First Aid Training for School Personnel
      • On-Demand Seizure First Aid Training for Any Audience
      • On-Demand Seizure Recognition and Response Training for Law Enforcement Officers
      • Seizure First Aid Training with our Member Organizations
      • Rescue Medications and Therapies
    • Seizure Safety for Students
      • On-Demand Seizure First Aid Training for School Personnel
      • Back to School
      • College Campus Safety
      • Seizure Prepared U
    • Seizure Action Plans
    • Rescue Medications and Therapies
    • Seizure ID Program
    • Seizure Alert and Detection Devices
    • Seizure Safety Tips
      • Camp Seizure Safety
      • Home Seizure Safety
      • Holiday Season
      • Travel and Vacation
      • Summer
      • Swimming and Water Activities
    • Seizure Action Plan Coalition
  • Get Help
    • Connect to Services
      • Camp Programs
      • Self-Management Programs
      • HOBSCOTCH
      • Medication Cost Assistance
      • Special Education Advocacy
      • Scholarships
        • Scholarships for Students with Epilepsy
        • Lorna Myers PNES Scholarship Fund
      • Support Groups
      • Residential Services
    • Connect to Health Care Providers
      • Find an Epilepsy Center
      • Find a Health Care Provider
      • Working with your Health Care Provider
    • Tools and Resources
      • Webinar Library
      • Women and Epilepsy
      • Veterans and Epilepsy
      • PNES / Functional Seizures
      • Transition of Care
      • CDC Epilepsy Program
      • Managing your Medications
      • S.T.E.P.S. Discussion Guide
      • Podcasts
      • Downloads/Printables
      • Videos
    • Self Care Resources
      • Self Care for Caregivers
      • Self Care for People with Epilepsy
  • Join Our Movement
    • Membership
    • Seizure Action Plan Coalition
    • Seizure Prepared U
    • Partner Organizations
    • Legislative Advocacy
    • Share your Story
      • Share Your Story
      • Shared Stories
    • Official Merchandise
  • News & Events
    • Latest News
    • eNewsletter Archive
    • Upcoming Events
      • Events Calendar
      • November 2025 – Sharing Solutions
      • Epilepsy Awareness Days: Disneyland and Disney World
      • 1 in 26 Day
  • Donate Now
  • En Español
  • Contact Us

Your Stories

The stories shared here offer genuine glimpses into the daily realities, challenges, and triumphs of people whose lives have been touched by epilepsy.

Featured Stories

Discover inspiring shared experiences

"By sharing our experience, we hope to raise awareness about pediatric epilepsy, the risks of nocturnal seizures, and the importance of comprehensive support systems that help children feel safe, supported, and empowered."

Our story shares our family’s journey after our six-year-old daughter, Janessa, was diagnosed with focal epilepsy following her first seizure.

— Jessica Nakagawa
Spring, Texas
Jessica Nakagawa
"I do my best to balance my medications and manage my stress and anxiety to live the healthiest life I can."

I am 29 years old and live with epilepsy. I had a stroke at birth, had seizures but were controlled with medication. The stroke affected...

— Skylar
Rensselaer, New York
Skylar

I developed Epilepsy in my late 20's when I was working hard as a CAD Operator and taking care of my Father when he had...

— Don C Ball
Burbank, Illinois
Don C Ball
"It was a tough journey to change people's minds, who believe epilepsy is a curse and also a witchcraft."

I began my epilepsy supporting journey in 2015 by creating an epilepsy awareness campaign which touched the community. We formed a community-based organization known as...

— Patrick Chirongo - In his own words
Malindi, Kenya
Patrick Chirongo - In his own words
"With proper support and treatment, the pain and struggles of epilepsy can be lessened, and those affected can reclaim control of their lives."

I'm a published book author of "An Education In Epilepsy In My Own Word". Drawing from my personal experience and extensive research, I aim to...

— Sallie Johns
Harrisburg, Pennsylvania
Sallie Johns
"I have been having Seizures since 1986"

I have been having Gran Mal Seizures since 1986. When I was an infant I was diagnosed with menigitis. They believe this is what is...

— Lambert D. Talley
Compton, California

All Stories

Click any name to read their story

  • Jessica Nakagawa
    Spring, Texas
  • Skylar
    Rensselaer, New York
  • Don C Ball
    Burbank, Illinois
  • Patrick Chirongo - In his own words
    Malindi, Kenya
  • Sallie Johns
    Harrisburg, Pennsylvania
  • Lambert D. Talley
    Compton, California
  • Eskander Ahmed
    Tunisia
  • Kevin Weaver, Ethan's grandfather
    Show Low, Arizona
  • Millicent Misango
    Kenya
  • Jeremy Gibel
    Rockmart, Georgia
  • Diane Basty
    Pennsylvania

Join our community by sharing your experience. Your story could be the inspiration someone else needs to hear today.

Share Your Story Learn More

Phone: (347) 987-1610

Managing Organization of Seizure Action Plan Coalition (SAPC)

Connect With Us
Join Our Mailing List

Member Portal

© 2026 Epilepsy Alliance America | All rights reserved | Privacy Policy