Some facts about epilepsy

• Epilepsy is the tendency to have recurrent seizures.
• If someone is diagnosed with epilepsy, it means they have a tendency to have seizures (sometimes called fits). 
• 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.
• Every day in the UK, 75 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.
• 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.
• 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.
• 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 There are many types of seizures so these terms are too general and are now considered outdated.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 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 jerking movements have stopped
• 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 688,000 people last year.
• The website receives over 75,000 visits every month.
• Epilepsy Helpline, freephone 0808 800 5050, or helpline@epilepsy.org.uk, or text info to 07797 805390 - 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 (www.epilepsy.org.uk/liveadvice).
• 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 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.
• 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.

How to obtain further information

• Research your own information on our extensive website: www.epilepsy.org.uk.
• Write to us, enclosing a self-addressed envelope.
• Speak to an advisor on our Epilepsy Helpline, freephone 0808 800 5050.
• Access live on-line advice and information on www.epilepsy.org.uk/liveadvice