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I am Bea

I am Bea. I’m 15 years old. 

My epilepsy means I have focal seizures. 

For about the first 20 minutes, I'm very in and out of consciousness. I'm not there, and I'm not sure what's happening. It’s frightening and confusing because I don’t know what’s going to happen. 

And then, eventually, my body will start twitching. I won't fall over or anything. I'll just stand there, and my arms will stiffen up and my head will twitch afterwards. Then, I just need to sleep for the rest of the day. 

Bea

I have a spot on my brain that causes my seizures. I had my first seizure when I was nine years old, 10 days before Christmas. I was diagnosed the next summer, just before summer break, when I was 10 years old.  

With having epilepsy, life is quite scary and confusing, and very nerve wracking. Because I never know when I’m going have a seizure again, it makes me upset and terrified.  

In my spare time, I like to play sports, see my friends, and make things. I'm quite arty, so I've made origami flowers and some animals, and I'm making a pom-pom at the moment. Making things really helps relax me and takes my mind off my epilepsy.  

When I'm older, I would like to be a social worker and work for Child Protective Services. I think I’ve chosen this because it's about helping people and their families. And that's something I'm very passionate about. 

At school, it is quite nerve wracking and worrying because not many teachers or students really understand epilepsy. Many people think it's just dropping to the floor and shaking, but really there are so many different kinds.

School hasn't done much to help with my condition at all. They don’t have the time or resources to understand. When it is happening, I put my hand up and say I need to leave. I just go to the toilets for a minute or two, or to what we call the hub at school. Just to get a bit of time out.  

Being in a classroom isn't one of my favourite things. It’s quite hard to focus, due to the loud noises, the bright lights and the buzzing of the lights as well. It makes me very dizzy. Sometimes I have to leave class because it gets too much.  

I'm going into year 11 next month and I'm about to do my GCSEs. The school hasn’t done much to help support me. They've given me extra time on exams, but that's about it. I study a lot at home when there are upcoming exams.  

Sometime last year, the school hosted a careers fair where nurses, doctors, lawyers and engineers came in. There were lots of people. But it was in this big noisy room with echoes and bright lights, and I almost had an anxiety attack due to it. So, I had to leave. I hadn't had a seizure in a while, so the school didn't think that I was in any sort of danger or in any need of help. They could have set up a small room where I could find out about one of the career choices that I am interested in, but the school just forgot about me. 

One positive about school is my friends and how they understand me and my epilepsy. They don't treat me differently, but they understand when I'm unwell how to care for me. 

Help schools to understand epilepsy, so they support students like me. 

I am Bea. Understand my epilepsy. 

Help children like Bea and support #UnderstandMyEpilepsy

Help children like Bea and support #UnderstandMyEpilepsy

Would you like to learn more about the campaign?

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

Help children like Bea and support #UnderstandMyEpilepsy

Do you know a young person with epilepsy?

If you know a young person who has epilepsy, you might be unsure of how to talk to them about it. Not all epilepsies are the same, so it can affect people differently. But don't worry, understanding their condition starts with a simple conversation. Click here to find out more.

Help children like Bea and support #UnderstandMyEpilepsy

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.