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 There are many types of seizures so these terms are too general and are now considered outdated.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 - AssessAssess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury

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

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

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

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

N - NeverNever 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 

Some facts about Epilepsy Action

• A charitable and independent organisation founded in 1950 to improve the lives of people with epilepsy in the community.
• The largest member-led epilepsy organisation in the UK.
• Directly helped over 1.1 million people last year.
• The website receives over 75,000 visits every month.
• Epilepsy Helpline – the helpline service can be accessed in a number of ways. Freephone 0808 800 5050, or email helpline@epilepsy.org.uk, Tweet to @epilepsyadvice or text info to 07537 410 044.  The Epilepsy Helpline provides confidential advice and information to members of the public and professionals on many aspects of epilepsy.
• National network of around 100 branches and groups in England, Wales and Northern Ireland, to provide a range of local support.
• Dedicated Accredited Volunteers throughout England, Wales and Northern Ireland.
• Offers a range of literature and DVDs covering all aspects of epilepsy. Leaflets available in Polish and Urdu.
• Membership - to enjoy regular magazines and updates, and free personal accident insurance, join Epilepsy Action as a member. This costs from only £17 a year for standard membership. There is a reduced rate of £11 for people claiming benefits, receiving a pension or in full time education. Just £45 a year provides professional membership, complete with access to the journal Seizure. Call, email or join online now.
• Publishes two membership magazines: Epilepsy Today and Epilepsy Professional.
• Initiated and administers the Sapphire Nurse Scheme which, since 1995, has funded 88 epilepsy specialist nurses across the UK.
• Offers a wide range of conferences and educational activities each year.