If you have a brother or a sister with epilepsy, you are not the only one. In the UK, around 51,500 children have epilepsy – that’s enough children to fill 715 London buses!
Many of them also have brothers and sisters. Like many other brothers and sisters, you probably have lots of questions about epilepsy. You might also want to know how to deal with your own feelings about it.
This information is to answer some of your questions. It will also tell you where you can get more help and support.
In this section
- What is epilepsy and what are seizures?
- Can I get epilepsy too?
- How can I help my sister who has epilepsy?
- What do I do if my sister has a seizure?
- Are there things my sister can’t do because of epilepsy?
- I feel frightened when my sister has a seizure
- I feel responsible for looking after my sister who has epilepsy
- My sister who has epilepsy gets more attention than me
- I worry about how epilepsy affects my sister
- I feel proud of my sister who has epilepsy
- I like having fun with my sister who has epilepsy
- I don’t like it when my sister who has epilepsy has to go to hospital
- I feel sad that my sister has epilepsy
- My sister has another condition, as well as epilepsy
- I feel angry that my sister has epilepsy
- I have learned lots of things because my sister has epilepsy
- Is there more help for brothers and sisters of children with epilepsy?
Remember – brothers and sisters are very important too!
Epilepsy is a medical condition caused by something unusual that happens in a person’s brain. It sometimes causes them to have seizures. Some people have other names for seizures – they might call them fits, convulsions, attacks, funny turns or something else. Your family might have your own name to call your sister’s seizures.
You can read all about epilepsy and seizures on Epilepsy Action’s pages for children.
Top tip You may have questions about epilepsy. An epilepsy nurse is a good person to ask. Make a list of any questions you have and ask them next time you both go to an appointment with an epilepsy nurse.
Some brothers and sisters worry about getting epilepsy too. But you won’t get it just because your sister has it.
Anyone can get epilepsy, and often doctors don’t know why it happens. People are most likely to develop epilepsy when they are under the age of five or over the age of 65.
It is not anyone’s fault that your sister has epilepsy.
Top tip – Remember that you cannot catch epilepsy. It is not passed on from someone else, like a cold or flu.
There are lots of ways brothers and sisters can help. Here are some suggestions:
- Spend time together, playing and having fun
- Chat and listen to your sister if she wants to talk about how she feels
- Tell her you care about her
- If your sister misses something at school or at home when she has a seizure, tell her about it later.Draw a picture of it for her or write about it
Top tip – Treat your sister just like everyone else. Keep doing the things you enjoy together.
If your sister has a seizure and falls down, get a grown up to help, as quickly as you can.
If you can’t find a grown up straight away, here are some things you can do:
- Keep as calm as you can
- Put something soft under her head, like a pillow, cushion or coat
- When your sister stops moving around, roll her onto her side, if that is easy for you to do. This can help her to breathe
- Find a grown up as soon as you can
- Don’t put anything in your sister’s mouth
- Don’t give her anything to eat or drink
If a grown up wants to know more about first aid for seizures, tell them about Epilepsy Action’s website. They will find lots of information about first aid.
Ask your parent, or another adult who looks after you, to put a plan about how to help your sister during a seizure, on the fridge door.
Top tip – Practice with your parent what you need to do during a seizure. This will help you to feel more confident about it.
Most people with epilepsy live ordinary lives and do what everyone else does. Lots of people with epilepsy go to school, college or university and have a job. They can have families of their own if they want to.
Sometimes your sister might need to do some things differently to you. This is to make sure she would be safe if she had a seizure. She might:
- Avoid places where she could get hurt if she had seizure, such as up a ladder or tree, or near water
- Have a shower instead of a bath, unless there is an adult with her
- Always wear a safety helmet when she’s on her bike and only cycle in places away from roads (brothers and sisters need to wear helmets too)
- Make sure there is always a grown up watching when she is swimming
Some people with epilepsy cannot look at flashing lights, because that can make them have a seizure. This is called photosensitive epilepsy. Not many children have this - your parent will tell you if your sister does.
Top tip – Ask your parent to tell you about things that your sister needs to do in a different way to you.
It’s normal to feel frightened when you see someone having a seizure, especially if they fall down. Here are some things you can do, to help you feel less frightened.
- Find out as much as you can about epilepsy and seizures, so you understand it better.
- Ask your sister and parent to describe what happens when she has a seizure. If you know what to expect, it’s less frightening.
- Learn what to do when a seizure happens. This will help you feel calmer.
- When a seizure is happening and a grown up is dealing with it, do something that helps you feel calm. For example, you could listen to music, count slowly to ten, take long slow breaths or stroke a pet.
- When your sister is feeling better, talk to your parent about how you felt when the seizure happened
Top tip – Learn about seizures so that you understand what is happening.
There might be times that you look after your sister. This might be:
- If your parent or another grown up is busy, and has asked you to make sure your sister is safe
- At school – you might feel that you have to look out for her in case she has a seizure
- At night - if you sleep in the same bedroom you might be listening out for your sister
- If your sister has other conditions and you help look after her
If you are worried that you have too much responsibility, ask your parent if other grown-ups can look after your sister instead.
If you do a lot of caring for your sister, you might be called a young carer. As a young carer, you might not have enough time to do your homework or have time for yourself.
Top tip – Tell your teacher if you think you have too much responsibility for looking after your sister.
Your parents might need to give your sister extra help and attention because of her epilepsy. This might not always feel fair, and it’s normal for brothers and sisters to feel jealous.
Getting time with your parents is really important. It can make you feel good.
Top tip – Ask your parent to spend some time with you every day, doing something that you enjoy.
It is normal for brothers and sisters to worry at times. You might worry about your sister:
- having a seizure
- coping at school
- being in hospital
- Giving your parent lots to do
Worrying might make it hard for you to sleep or to concentrate at school. Here are some things that can help:
- Tell your parent or teacher about your worries – they prefer to know about them, so they can help you
- Write down your worries in a diary - this helps to get them out of your head
- Send a letter to YoungSibs and they will give you ideas to help sort your worries out
- If you are very worried or upset about something, call ChildLine at any time of the day or night, Tel: 0800 1111
Many people feel proud about their brother or sister. You might feel proud of yours because she has achieved things, or because she has a good attitude about things.
Top tip – Write a list of things about your sister that make you feel proud, and then give it to her.
It’s good to have fun together. It makes us feel better and is good for our health. You might like:
- Chatting together
- Playing games
- Dressing up
- Watching films
- Doing sports
Top tip – Together make a list of all the fun things you can do when you have time together.
Sometimes children with epilepsy have to go to hospital when they have a seizure. This can be a really hard time for brothers and sisters. You might:
- Worry that you will miss your parent if they stay in hospital with your sister
- Worry about whether your sister is going to be OK
- Worry about who is going to look after you when your parent is away
- Find it hard that everyone is looking after your sister and not noticing you
Top tip - Ask your parent to make a plan for hospital trips, so that you know what will happen and who will look after you.
It is normal for brothers and sisters to feel sad at times. You might feel sad if:
- Your sister has to go to hospital
- Your sister is resting after a seizure, and cannot play with you or go out
- You don’t have anyone to talk to about your feelings
These are some things you can do to feel better:
- Ask your parent to give you a hug
- Talk to your parent or friend about how you feel
- Write your feelings down in a diary
Top tip – If you feel sad a lot of the time tell your parent or teacher. They can get help for you in school to deal with this.
Some children who have epilepsy also have other conditions. Some of these are:
- Cerebral palsy
- Down syndrome
- Learning disabilities
- Tuberous sclerosis
Your parent will probably have already told you if your sister has another condition. If you are not sure, you can ask them.
Top tip – You can find out more about other disabilities or conditions on the YoungSibs pages about disability
It’s normal to feel angry sometimes, when someone you know has a medical condition. You might feel angry because:
- It doesn’t seem fair that your sister has epilepsy
- You don’t like it when family activities need to be changed
- Other children say things about your sister that you don’t like
These are some things you can do:
- Write down how you feel or draw a picture of how you feel
- Talk to your parent or a teacher about your feelings
- Do things to get calm again – count to ten slowly, listen to music, breathe deeply and slowly
Top tip – It is OK to feel angry. However, it is not OK to hit people or say nasty things to them. If you feel angry a lot of the time, ask your teacher to help you with this.
You have probably learned stuff that other children and young people don’t know about. You might know:
- How to help someone who is having a seizure
- How to stay calm in an emergency
- How to explain epilepsy to people
- What type of jobs the different medical people do
Top tip – Make a list of all the things you have learned because of your sister’s epilepsy and be proud of your skills.
At YoungSibs you can:
- Ask questions about issues to do with your brother or sister from the YoungSibs team
- Find information about different conditions and disabilities for brothers and sisters
- Find tips for dealing with your feelings as a brother or sister
- Find tips for dealing with difficult situations as a brother or sister
- Find ideas for enjoying family life as a brother or sister
- Join a forum to chat to other brothers and sisters in the UK
YoungSibs also has a brochure for brothers and sisters. Download Information for children and young people who have a brother or sister who is disabled, has special educational needs or a serious long-term condition.
Some of the other places you can get help from are:
- Your school - As well as teachers, schools have mentors and counsellors for pupils to talk to about their feelings and problems
- ChildLine - This is a 24 hour online and telephone support service for children and young people with any issue they are worried about. It’s free to call
Tel: 0800 1111
- Contact - Tell your parents about a guide to supporting you
- YoungCarers - This is an online support service for children and young people who help to look after someone in their family
Top tip – There is information and support for you as the brother or sister of someone with epilepsy. It is OK to ask for help if you need it.
Remember – brothers and sisters are very important
We think that you are really important and that people should know about how:
- You support your sister with epilepsy
- You help other people understand epilepsy better
- You have to deal with some difficult stuff at times
- You often put your sister’s needs first
It is OK to ask for information and support for yourself when you have a sister with epilepsy.
Content written by Sibs
Sibs is the UK charity for brothers and sisters of disabled children and adults.
Epilepsy Action would like to thank Sibs, the UK charity for brothers and sisters of disabled children and adults.
Sibs have kindly prepared the information on this page. It is based on their own research, experience and expertise.