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of everyone affected by epilepsy

Epilepsy facts, figures and terminology

Some facts about epilepsy

  • Epilepsy is the tendency to have recurrent seizures.
  • There are around 40 different types of seizure and a person may have more than one type.
  • Epilepsy can affect anyone, at any age and from any walk of life.
  • In the UK, 600,000 or one in every 103 people has epilepsy.
  • Epilepsy is a neurological condition.
  • Every day in the UK, 87 people are diagnosed with epilepsy.
  • Only 52 per cent of people with epilepsy in the UK are seizure-free. It is estimated that 70 per cent could be seizure free with the right treatment.
  • Around five people in every 100 will have an epileptic seizure at some time in their life. Out of these five people, around four will go on to develop epilepsy.
  • Many people who develop epilepsy below the age of 20 will ‘grow out of it' in adult life.
  • Many people with epilepsy are still discriminated against due to ignorance about the condition.
  • Epilepsy is covered by the Equality Act in England, Scotland and Wales, and the Disability Discrimination Act in Northern Ireland.
  • Many people with epilepsy can take part in the same activities as everyone else, with the help of simple safety measures where appropriate.
  • People who have been seizure-free for a year can re-apply for their driving licence.

Terminology to avoid

  • Illness: epilepsy is a condition, not an illness.
  • Fit: although the term ‘seizure' or ‘epileptic seizure' is preferred by many people, some people with epilepsy choose to use the word ‘fit’.
  • An epileptic: it is important to look at the person before the medical condition, therefore it is more appropriate to say ‘a person with epilepsy'.
  • A victim, sufferer: this implies someone is helpless.
  • Grand Mal or Petit Mal: terms previously used to describe types of seizure. There are many types of seizures so these terms are too general and are now considered outdated.

We are often asked about the word 'brainstorming' and whether its use is acceptable. Our view is that it depends on how the word is used. If the word is being used to describe a meeting where people are suggesting ideas, then its use is not offensive to people with epilepsy. However, it should not be used to describe what happens in the brain during a seizure.

Basic first aid for seizures

ACTION - First aid for tonic-clonic seizures

The person goes stiff, loses consciousness, falls to the floor and begins to jerk or convulse. They may look a little blue around their mouth from irregular breathing. Tonic-clonic seizures can last a few minutes.

Remember ACTION for tonic-clonic seizures:

A - Assess
Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury

C - Cushion
Cushion their head (with a jumper, for example) to protect them from head injury

T - Time
Check the time – if the seizure lasts longer than five minutes you should call an ambulance

I - Identity
Look for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do

O - Over
Once the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round

N - Never
Never restrain the person, put something in their mouth or try to give them food or drink

Call an ambulance if:

  • You know it is a person’s first seizure, or
  • The seizure lasts for more than five minutes, or
  • One seizure appears to follow another without the person gaining consciousness in between, or
  • The person is injured, or
  • You believe the person needs urgent medical attention 

Comments: read the 9 comments or add yours


Regarding the fewer than 1% of the UK population with epilepsy (stats provided by epilepsy.org.uk) , what portion suffers from photo-induced epilepsy?

Submitted by Puzzled on


Submitted by HEATHER on

Hi Heather
Thank you for your question.

We have a list of alarm companies on our website. We cannot recommend any specific alarm. But you could try posting your request on our online forum, forum4e. There may be people on the forum willing to share their experiences of alarms with you.

I hope you will find one to suit.

Diane Wallace
Advice and Information Team

Submitted by Diane, Epilepsy... on

I live in the US but have a friend in the UK. My seizures are not controlled by medication. They are greatly reduced in frequency though. My friend got angry with me because I am not seizure free, as I have at least one every 3 to 6 months. He said he knows 2 people who take medication and have been seizure free for 10+ months and that I should be as well, cause there has to be a medication that will do for me what it does for his friends. He says that no one in the UK has uncontrolled seizures. Is this true, if so, how is this accomplished?

Submitted by Stacy on

Hello Stacy

Not everyone in the UK is seizure free. Although the aim of treating epilepsy is for a person to be seizure free, not everyone achieves this. It is estimated that approximately seven out of 10 people could be seizure free with the right medicine though.

Maybe you could talk to your epilepsy doctor about this. This will give you chance to check that your epilepsy treatment is still the best for you.

As you are in the US, maybe you could also get in touch with the Epilepsy Foundation to find out more about US treatment options and things to talk to your epilepsy doctor about.


Epilepsy Action Helpline Team

Submitted by Karen-Epilepsy ... on

I have epilepsy and it’s controlled with medication I wish I was like the other people I feel quite different when I am around my friends I feel if they treat my differently than others/friends my Parents are the best supporting me x

Submitted by Mollie on

Do you know if there is any chance of the people in the uk being able to get the drug ‘cbd oil’ that is available in the u.s. and if not is there anything being done for the British to receive this wonderful drug as this seems to be stopping many illnesses including epilepsy. I can’t wait to be able to get it and managing to control mine because I am sure this will work.

Submitted by Lisa Kemsley on

Hi Lisa 

We are aware that in the UK research is being done to look at the safety of one component of cannabis called cannabidiol (CBD). We welcome research in to this area:


We’ve published a number of articles about CBD research in our magazines Epilepsy Today and Epilepsy Professional that you might be interested to read. https://www.epilepsy.org.uk/research/epilepsy-cannabis-cannabidiol 

If we can be of any more help, please feel free to contact our helpline team directly. You can either by email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.



Epilepsy Action Helpline Team

Submitted by rich on