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Information for Host Families

two hearts in colours of Ukrainian and Irish National Flags.

From everyone at Epilepsy Ireland, we would like to thank you for opening your home and being part of the Irish response to the humanitarian crisis which is currently facing Ukrainians. Given the numbers of refugees that Ireland is set to welcome as part our country’s response to the war, it is highly likely that many people arriving in Ireland will be living with epilepsy.

As a host family, epilepsy may be a new condition for you and first and foremost, we want you know that Epilepsy Ireland is here for any advice and support which you may require.

On this page we have outlined some key information that will be of use to you if you are welcoming a person with epilepsy into your home.  We have signposted to other resources/ booklets on our website which may be of use as you support your guest on their journey with epilepsy.

What is epilepsy?

Epilepsy is the tendency to have repeated seizures in the brain. A good way to picture epilepsy is to think of a computer crashing and rebooting. Before your computer crashes, it might begin to run slowly or behave differently. Then the screen may go blank or cut out and the computer needs to be restarted but usually, after a few minutes and with time, care & attention, you can get back to normal. This is what is happening in the brain before during and after a seizure.

Epilepsy is an individual condition and each person’s epilepsy is unique to them. The way seizures present; how a person’s seizures are triggered; and how they are treated will vary from person to person.

Epilepsy is most commonly treated with anti-epileptic medication and for the majority of those living with the condition (70%), they will go on to become seizure free. For the other 30%, unfortunately the condition is more difficult to control, and regular seizures are part of the person’s life.

What do I do in the event of a seizure?

Remember three key words – Time, Safe, Stay.

TIME – The first thing you should do is TIME the seizure. This is because if a seizure goes over 5 minutes, an ambulance should be called. Where emergency medication is prescribed, please follow the protocol (further details below).   

SAFE – Keep the person SAFE during the seizure. If a person is having a convulsive seizure, cushion their head with something soft if possible and remove any harmful objects e.g. furniture from their vicinity. NEVER put anything in a person's mouth or restrain them during a seizure as these are myths when it comes to seizure first aid! Be aware that there are also types of seizures where the person does not experience convulsions. Instead, they may “zone out” or stare blankly, become confused or agitated, display behaviours like chewing, smacking their lips, fiddling with their clothes or wandering aimlessly. In this type of seizure, the person’s awareness of their surroundings is affected and it is important to gently guide the person away from any danger. As with convulsive seizures, never restrict the person’s movements. 

STAY – During the seizure and after it passes, STAY with the person. Typically, when a seizure ends, a person with epilepsy will be confused, often exhausted and may have experienced an injury if they have fallen. Stay with them until recovery is complete, calmly reassure the person, explain what has happened and ensure normal first aid steps are taken if there has been an injury.

We also have more detailed seizure first aid posters that are available to download at the links below. Please note again, there is not just one type of seizure and a person could be fully upright during a seizure – you may not have been aware of this until now.

 

There are also many other types of seizures – further information on each of these can be found on the Seizure Types section of our website.

Will flashing lights affect the person staying with me?

Photosensitive epilepsy is actually much rarer than the wider population believe it to be. Photosensitive epilepsy affects approximately 3-5% of people with epilepsy. If possible, it is important to establish whether your guest has photosensitive epilepsy or not.

Is there an emergency medication that can stop seizures?

Yes. An example of one such medication is Buccal Midazolam. If given promptly, it can stop a prolonged and potentially life-threatening seizure. However, not all people with epilepsy are prescribed this medication. This medication will be issued with a protocol outlining when and how the medication is administered. You will need to try and establish whether your guest has been prescribed Buccal Midazolam. If they have, our team can organise a demonstration on how to correctly administer. Visit Our Local Service section to find details of your local Community Resource Officer. 

What are Community Resource Officers?

Community Resource Officers are the frontline of Epilepsy Ireland’s services and are there to provide information, support and advice to people with epilepsy and their families. As someone who is now hosting a person with epilepsy, this support also extends to you. If you need any support or advice, please do not hesitate to contact your local Community Resource Officer.  

Key booklets and resources

The following Epilepsy Ireland booklets will be of benefit to you in better understanding the condition and to help support your new guest. All can be read and downloaded at the links below:

Information for people arriving from the Ukraine.

You can find the English version of key information that we have on our site in Ukrainian. We will endeavour to update this as and when more information becomes available.