Dealing With Epilepsy

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p e l s i y p E

ITH W G N I L

A YOUNG PERSON’S EXPERIENCE

BY KARIS, AGED 17

D U C T I ON O R T IN

This is my sister!

Hi, my name is Karis. I’m 17 and from Teesside.

My sister was diagnosed with epilepsy when she was six months old. She is starting primary school and I’m worried that staff may not have the correct knowledge to provide support for her. So I’ve made this booklet with the help of Fixers, the charity that gives young people a voice.

When I was at school I didn’t know much about epilepsy.

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One day someone had a fit in assembly when a video with flashing images was played. It got around the school and the pupil didn’t come in for a week or two afterwards. When they did, some children thought it was funny to pretend to have a fit in front of him.

I’ve written this booklet with my sister in mind. I hope that teachers will feel more confident about supporting children with epilepsy after reading it, and pass on the information to their pupils.

WH

PILEPSY? E S I AT

“Epilepsy is estimated to affect more than 500,000 people in the UK. This means that almost one in every 100 people has the condition.”

“Epilepsy is a condition that affects the brain and causes repeated seizures.

NHS Choices

“Electrical activity is happening in our brain all the time, as the cells in the brain send messages to each other. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This causes a temporary disruption to the way the brain normally works. The result is an epileptic seizure.”

Epilepsy can start at any age, but it most often begins during childhood.

The severity of seizures can differ from person to person. Some people simply experience an odd feeling with no loss of awareness, or may have a “trance-like” state for a few seconds or minutes, while others lose consciousness and have convulsions (uncontrollable shaking of the body).”

epilepsy.org.uk/info/what-is-epilepsy

nhs.uk/conditions/epilepsy The nervous system

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IZURE E S E PR

TRIGGERS My sister has absent seizures as well as full seizures. Some of her triggers are: • Rising temperature • A knock on the head

When my sister joined school, our parents made her teacher aware she had epilepsy. She has a specific set of medical requirements, so it was important for her teacher to note these down...

My little sister is too young to carry medication with her, so her teacher stores her rescue medication somewhere accessible in case of an emergency. Knowing where and how to use the medication can save a young persons life!

“Some children’s seizures happen in response to triggers such as stress, excitement, boredom, missed medication or lack of sleep.

Keeping a diary of their seizures can help to see if there are any patterns to when seizures happen.

If my sister has a seizure, and falls over, she could bump her head. At home her living room is carefully planned without any coffee tables or sharp objects nearby. In school this is tricky as there are many desks, but seating a young person with epilepsy away from walls, shelves and other objects could save any nasty accidents.

If you can recognise triggers, avoiding them as far as possible may help to reduce the number of seizures the child has.” epilepsysociety.org.uk [epilepsy childhood]

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-SEIZURE G N I DUR DON’T PANIC! And make sure the class is calm. Make sure the other children don’t crowd around.

“Parents, carers and education providers should be aware of the five steps they should take when a child or young person has a prolonged seizure: • Note the time when the seizure started.

• Clear the area to allow the child to move freely and safely.

• Administer rescue medication if the seizure lasts for 5 minutes or more (usually after 5 minutes in convulsive seizures).

• Reassure and monitor the child.

• Call an ambulance if the seizure continues for 5 minutes after giving rescue medication.”

THERE IS SUCH A THING AS AN ABSENT SEIZURE. NHS Choices

“They cause the person to lose awareness of their surroundings, usually for up to 15 seconds. The person will seem to stare vacantly into space, although some people will flutter their eyes or smack their lips. The person will have no memory of the seizure.”

If my little sister seems unfocussed or unresponsive it can mean she’s having an absent seizure.

youngepilepsy.org.uk [emergency rescue management]

I want teachers to be aware of absent seizures so they: 1. Don’t think my sister is being naughty if she’s being unresponsive. Avoid shouting.

2. My sister’s absent seizures may be followed by a full seizure, so be ready to take action. If she returns to consciousness after this, she is usually dazed and doesn’t know what just happened.

For more information on what to do if someone has a fit: nhs.uk/livewell/epilepsy/pages/ifyouseeaseizure.aspx

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EIZURE S T S PO

My parents recommended to my sister’s teachers that she be removed from the class after a seizure to recover. She might be dazed and feeling a bit embarrased, so we always like to reassure her. Let her know it’s okay.

I wish someone had taken the time to explain what had happened to the epileptic child who had a fit in my assembly. I think it would be a good idea to explain to the class that my sister is fine, tell them about what happened, and allow them to ask questions*. Let my sister know you have spoken to the class too.

“For some children having a diagnosis of epilepsy will not affect their day-to-day lives. For others it may be frightening or difficult to understand. They may feel embarrassed, isolated or different in front of their peers. Encouraging a child to talk about their concerns may help them to feel more positive.”

STIGMA CAN DEVELOP FROM NOT TALKING ABOUT ISSUES, SO BE OPEN AND HONEST

epilepsysociety.org.uk [epilepsy childhood]

After seizures my sister tends to sleep for ages, she doesn’t like to leave her mam afterwards and becomes very clingy.

If the other children know what epilepsy is, I think they are less likely to be scared, or make fun of a child who has had a seizure.

I hate to think of my sister being made fun of in school because of her seizures!

*For free online classroom resources: learn.epilepsy.org.uk/training-for-schools

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L LINKS U F E US youngepilepsy.org.uk nhs.uk/conditions/epilepsy/ learn.epilepsy.org.uk/training-for-schools facebook.com [search ‘Abbies Love Charity’] fixers.org.uk [search ‘Act on Epilepsy’]

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Disclaimer: This booklet should not be relied on or substitute for formal, medical or other advice.

CREDITS A FIX BY Karis PROJECT COORDINATOR Alexandra Lille PROJECT ADMINISTRATOR Natalie Littlewood GRAPHIC WITH THANKS TO FreePic PRODUCER Lee Scott

FOR MORE INFORMATION AND TO VIEW OR DOWNLOAD THIS BOOKLET ONLINE, VISIT:

fixers.org.uk/epilepsyawareness

Fixers is a campaign that helps young people ‘use their past to fix the future’ and is part-funded by the National Lottery through the Big Lottery Fund.