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.
• 456,000 or one in every 131 people in the UK has epilepsy.
• Epilepsy is a neurological condition.
• 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.
• One in 20 people will have a single seizure at some time in their life.
• 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 Disability Discrimination Act.
• The vast majority of 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: the term ‘seizure' or ‘epileptic seizure' is preferred as people with epilepsy do not always experience convulsions.
• 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 depicts someone 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 There are many types of seizures so these terms are too general and are now considered outdated.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 upon the context: if the word is being used to describe a meeting where participants are suggesting ideas, then its use is not offensive to people with epilepsy. However, it should not be used to describe a seizure or the electrical activity within the brain during a seizure.

Basic first aid for seizures

Do

• Protect the person from injury - (remove harmful objects from nearby)
• Cushion their head
• Look for an epilepsy identity card or identity jewellery
• Aid breathing by gently placing them in the recovery position once the seizure has finished.
• Be calmly reassuring
• Stay with the person until recovery is complete

Don’t

• Restrain the person
• Put anything in the person’s mouth
• Try to move the person unless they are in danger
• Give the person anything to eat or drink until they are fully recovered
• Attempt to bring them round

Call an ambulance if…

• You know it is the person’s first seizure
• The seizure continues for more than five minutes
• One tonic-clonic seizure follows another without the person regaining consciousness between seizures
• The person is injured during the seizure
• 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 731,000 people last year.
• This website receives approximately 135,000 visits every month.
• Epilepsy Helpline - freephone 0808 800 5050 or helpline@epilepsy.org.uk - provides confidential advice and information to members of the public and professionals on many aspects of epilepsy.
• A new online live advice and information service can be accessed through our website.
• National network of around 100 self-help branches in England, Wales and Northern Ireland, to provide local support.
• Dedicated accredited volunteers throughout England, Wales and Northern Ireland.
• Offers a range of literature, videos, DVDs and a CDs covering all aspects of epilepsy. Leaflets available in Bengali, Cantonese, Gujarati, Hindi, Kurdish, Punjabi, Somali, Urdu, French and Turkish. Other languages are planned.
• Membership - To enjoy regular magazines and updates, access to our online memberzone and free personal accident insurance, join Epilepsy Action as a member 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) and £40 a year for professional membership. Call, email or join online now.
• Publishes two membership magazines: Epilepsy Today and Epilepsy Professional
• Publishes a membership magazine: Epilepsy Today.
• Initiated and administers the Sapphire Nurse Scheme which since 1995 has funded 81 epilepsy specialist nurses across the UK.
• Undertakes a wide range of conferences and educational activities each year.

Notes to Journalists

For journalists' enquiries only, please contact Epilepsy Action's press office:

• Phone: +44 (0)113 210 8800
• Fax: +44 (0)113 391 0300
• Email: press@epilepsy.org.uk

For general enquiries from members of the public, please either use our Epilepsy Helpline freephone 0808 800 5050 or helpline@epilepsy.org.uk.

You may also want to see the guide 'Hacked Off: A Journalist's Guide To Disability' [PDF], produced by Disability Now and the National Union of Journalists.

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