Young epilepsy reps in front of selfie wall

Young Epilepsy Attends Youth Summit of the International Epilepsy Congress 2023

This weekend, 6 members of our Youth Voice Network travelled to Dublin and made history by attending the very first Youth Summit, at the 35th Annual International Epilepsy Congress, hosted by the International Bureau of Epilepsy.

young reps

Our amazing Youth Voice representatives: Zaid, Livvy, Renell, Annie, Daisy and Beth

The Summit bought together inspiring young people with epilepsy, from all over the world! This meaningful event not only highlighted the challenges faced by young people living with epilepsy but also provided a platform for them to share their experiences, knowledge, and advocate for a better future. Some hot topics of conversation were:

young people at table

Challenges Faced by Young People Living with Epilepsy:

The group discussed survey findings and then voted for their Top 5 most challenging areas:

  • Mental Health and Wellbeing
  • Social
  • Stigma
  • Information & Support
  • Employment

They shared their experiences of managing epilepsy while pursuing education, employment, and relationships. The discussions highlighted the need for increased awareness and support to ensure that young individuals living with epilepsy can thrive in all aspects of life.

table discussions

Self-Care for People Living with Epilepsy:

One of the crucial topics explored at the Youth Summit was the importance of self-care and setting boundaries. Niamh Jones from Epilepsy Ireland led the inspiring session and helped us to discuss how epilepsy affects mental health, as well as ways to manage stress, maintain a healthy lifestyle, and prioritise mental wellbeing.

youth voice and Niamh

Epilepsy Research Advancements:

Another key focus of the Youth Summit was research advancements in epilepsy. Presentations and discussions centred around the latest developments in understanding epilepsy, treatment plans, and potential breakthroughs in epilepsy management. The exchange of knowledge and ideas among the young participants and researchers sparked hope for improved outcomes, balancing epilepsy care with social impacts:

Introduction to Epilepsy Research: The past, present and what’s exciting for the future – Professor Matthew Walker, UCL

Patient and Public Involvement in Research – Annee Amjad, Epilepsy Research & Dr Gareth Morris, UCL

Global Epilepsy Needs Survey - Caoimhe Bennett, Epilepsy Research

youth voice members

The biggest highlight of the Youth Summit was the opportunity for the members of our Youth Voice Network to meet and connect with others with shared experiences. True friendships were made, and a network of support was established connecting our members with other charities and IBE’s Global Youth Team. We are so proud of our Youth Voice Network, continuing to use their voices to advocate for epilepsy awareness and research.

Together we create possible.

Daisy and Beth on dance mat