Call For Stories 2025
Epilepsy affects over 50 million people globally, yet we still have much to learn about its full impact on individuals and communities.
That’s why this #EpilepsyDay, building on 2024’s “My Epilepsy Journey” theme, we’re asking you to share your personal experiences that shed light on the unmet everyday needs of people with epilepsy.
Your stories will bring greater context to the findings of IBE’s Global Epilepsy Needs Study (GENS) and ILAE’s newly developed Clinical Care Pathway.
Our goal is to use these insights to ensure people with epilepsy receive not only the best possible medical care but also the support they need to thrive in all aspects of their lives.
We want to hear YOUR story. How has epilepsy affected your daily life? What unmet needs have you faced? What support have you needed along the way?
By sharing your epilepsy journey, you will:
- Help us understand the real-world impact of epilepsy.
- Contribute to improving epilepsy care worldwide.
- Join the global epilepsy community in advocating for change.
How To Share Your Story
- Choose your format: Tell your story in writing (200-300 words) or create a short video (2-3 mins max)
- Select a domain: The Global Epilepsy Needs Study (GENS) highlights key areas of life impacted by epilepsy. Choose one of the domains below to focus your story.
- Submit your story via this Google Form
If you cannot access the Google Form, submit your story using this Word document.
When describing your experiences, consider the following:
- What specific needs have arisen related to your chosen domain? (e.g., Did you need flexible work arrangements due to seizures? Did you require specialized educational support?)
- How did these needs impact your everyday life? (e.g., Did it affect your social interactions, your independence, your emotional well-being?)
Need some inspiration?
Use the following story prompts as a springboard for sharing your unique experiences, but don’t feel limited by these prompts – your own experiences and perspectives are what matter most!
- Knowledge and advice: Have you had access to reliable information about epilepsy? Do the people around you have the knowledge to support you?
- Safety and survival: Have you experienced seizures in public? How did people react? Did you feel safe and supported?
- Healthcare and wellbeing: Share your experiences navigating the healthcare system to manage your epilepsy. Have you faced difficulties accessing health services or treatments for epilepsy?
- Learning and education: Have you experienced any cognitive challenges related to your epilepsy, such as difficulty with memory, attention, or learning?
- Work and income: Have you encountered challenges with finding or maintaining employment, disclosing your condition to employers, or dealing with workplace accommodations?
- Safe transportation and driving: What challenges have you encountered in accessing transportation, whether through driving or public transportation? How has this affected your independence, social life, or ability to access essential services?
- Community and household: Has your epilepsy affected your relationships with others? Have you withdrawn from social situations or avoided activities due to fear of having a seizure, feeling different, or facing stigma?
- Mental health and wellbeing: Have you experienced anxiety, depression, or other emotional challenges related to your condition? How have these challenges impacted your daily life and overall quality of life?
- Sexual and reproductive health: Have your epilepsy medications affected your hormones, menstrual cycle, or sexual function? Has epilepsy affected your ability to be intimate or have children?
- Achieving your goals: Reflect on your overall quality of life. How has epilepsy affected your self-esteem, happiness, and ability to pursue your goals and dreams? What kind of support or resources would help you reach your full potential?
