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Understand My Epilepsy

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1 in 3 children with epilepsy do not get the support they need at school

They are unnecessarily missing out on their childhood and their futures are being put at risk, because people don’t understand epilepsy and how it can be different for everyone.

Sign our petition today to tell UK governments that they must ensure schools have an Individual Healthcare Plan (IHP) in place for every child with epilepsy.

Sign the petition

The #UnderstandMyEpilepsy campaign is calling for every school across the UK to understand their students’ epilepsy. This 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 so that they can reach their potential.  

Join the #UnderstandMyEpilepsy campaign and help ensure children and young people with epilepsy don't miss out on the precious moments of childhood. They deserve a future full of possibility, unlimited by misunderstanding. Find out more below.

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How to get involved

Sign the petition

Tell UK governments that children with epilepsy must be included fully in school life.

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.

Sign the petition

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.

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 

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.

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We're listening

The Youth Voice Network is a nationwide community of young people living with epilepsy. Add your voice to the conversation and help us ensure every young person living with epilepsy is safe and included.

We can’t do it without you.

Be a part of the change and join today!

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. 

Sign the petition

How can I better understand?

How can I better understand?

Are you a young person with epilepsy?

You have certain rights at school. It is your school’s responsibility to make sure you have the support you need. But it can help to know your rights and what you are entitled to. Click here to find out more.

How can I better understand?

Do you know a young person with epilepsy?

If you know a young person grappling with epilepsy, you might feel uncertain about approaching the topic with them. Epilepsies vary, impacting individuals in diverse ways. However, understanding their condition can begin with a straightforward conversation. Click here to learn more.

How can I better understand?

Do you teach a young person with epilepsy?

If you are an education professional or a provider of extracurricular activities for children and young people please visit our Guide for Schools which provides, information, tools and guidance and supporting young people in your care. Click here to find out more.

Epilepsy support at school – Survey report 2023

Young people with epilepsy, and their parents, told us about their experiences of epilepsy support at school.

  • 1 in 3

    children with epilepsy do not get the support they need at school

    They are unnecessarily missing out on their childhood and their futures are being put at risk, because people don’t understand epilepsy and how it can be different for everyone.

  • Only 1/3

    of school staff feel confident managing a seizure in a classroom

    This highlights the need for better education and training to ensure the safety and well-being of students with epilepsy.

  • 42%

    of people with epilepsy age 16-59 are unemployed

    This shows that we need to create more job opportunities and support for people with epilepsy to help them find work.

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Donate to the campaign

Your donations can help us provide free training and resources for school staff so that children don’t miss out.

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