Understand My Epilepsy

How to get involved

Young person led campaign

#UnderstandMyEpilepsy campaign is led by young people with epilepsy. We listen to them and work with them to amplify their stories.  Working together we will take their voices to the decision-makers and make them sit-up and listen.

Your voice can make people sit up and listen. Led by the voices of young people with epilepsy, we are asking all schools, colleges and universities to keep young people like you safe and included.

Are you a young person living with epilepsy? Click here to find out more about joining the Youth Voice Network 

Every child with epilepsy deserves to be safe and included at school

Children left feeling lonely, isolated and rejected. Unnecessarily excluded from opportunities at school and struggling to keep up with their classmates.

Shockingly, 1 in 3 children with epilepsy like Ruben are left without the crucial support they need at school.

Enough is enough! It's time for action. Together, let's demand change. Every child deserves an equal chance to succeed. Understand their epilepsy and help them reach their potential.

Add your name to the manifesto

Teaching children and young people? We’re here for you too.

We’re here to help you understand epilepsy and how to keep your students with epilepsy safe and included at school. 

Check out our Guide for Schools a one-stop shop of everything you need to know with the tools to make it happen.

For more help and support directly to your inbox, subscribe to our termly newsletter for people working in education settings. Keeping you informed of the latest events, training and resources.

Due to common misunderstandings about epilepsy, and what people mistakenly think it means you can and can’t do, young people are often met with unnecessary barriers preventing them from doing all the things they are capable of. Many are finding themselves excluded in school, from sport, social gatherings, and relationships.

As a child this can isolate them from important life experiences, and as they grow it can limit their social mobility, financial independence, and career progression. 

We plan to change that!

The #UnderstandMyEpilepsy campaign plans to help people understand that epilepsy is unique to each person. By listening and working with the young person and understanding what they are capable of, they can be safely included and supported to enjoy those precious childhood moments, and to reach their true potential.

Why is epilepsy unique for everyone?

Epilepsy is not a single condition; it can start at any age and there are many different types.

There is only one similarity, and that is everyone with epilepsy has seizures, but there are many different types of seizure and what happens to a person during a seizure can vary enormously.

What happens after a seizure also varies from person-to-person. Some people may need a moment to compose themselves and then they can pick-up where they left off, studying, working, or playing a sport. Other seizures may mean the brain and body needs more time to recover and they may need to sleep for a few hours or even a few days. 

Seizure triggers and anti-seizure medication side effects also play an important role in defining an individual’s support needs.  Seizure triggers vary widely, from lack of sleep and stress, to missing meals, being unwell and more. Some medications can cause drowsiness and/or dizziness, they can affect memory, learning and attention. Find out more.  

Quite simply, there is no single way to support a child or young person with epilepsy. But there are ways to understand what they need to be safe and included. 

If you would like to learn more about epilepsy read more.

Understanding someone with epilepsy means understanding their seizure type, their triggers, their medication side-effects, the impact on their learning. Understand their epilepsy and support them to be safe and included at school. 

Add your name to the manifesto