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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.

áTerminology 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 There are many types of seizures so these terms are too general and are now considered outdated.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 

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 £20 a year for standard membership. There is a reduced rate of £12 for people claiming benefits, receiving a pension or in full time education. Just £50 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.

How to obtain further information

  • Research your own information on our extensive website: www.epilepsy.org.uk
  • Speak to an adviser on our Epilepsy Helpline, freephone 0808 800 5050.
  • Write to us, enclosing a self-addressed envelope – Epilepsy Action, New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY United Kingdom

Comments: read the 7 comments or add yours

Comments

An excellent one-pager on Epilepsy to share with anyone who might be with you if/when you have a seizure - work colleagues, family, people you share your leisure time with, etc.

Submitted by Ian Watson on

Hi I've had epileptic seizures most my life from around the age of 12 and now I'm currently 20. I've had a brain scan years ago and that found nothing, now after about 20-30 seizures (maybe more) I've said enough is enough and have gone down the doctors to be checked over. I have got to go to the hospital for check ups and hopefully there isn't anything too serious and that I can be simply just given medication to fight my problems.

Submitted by Daniel hardwick on

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

Not trying to be a pedant, but I think the above could be read in the wrong way. I know common sense should prevail but if people are panicking it could be taken literally. I'd suggest the following change.

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

Submitted by Martin Wilkins on

How many people with epilepsy in the UK, are in receipt of Disability Living Allowance or PIP
Thank you

Submitted by margaret on

Hi Margaret

We are not aware of any such figures being available. These figures may not be available as some people my get the DLA/PIP for more then one medical condition.

Regards

Diane Wallace

Advice and Information Team

 

Submitted by Diane on

Hi I am a female of 38 yrs of age I got diagnosed with epilepsy in October 2013 that's when I took my first seizure was kept in hospital overnite saw specialist he confirmed it was epilepsy after I had a CCT scan. I am just letting people out there know about what benefits they can apply for I applied for pip in oct2013 had to fill out form about how my disability effects me everyday life. Anyway it took about 6months to get everything sorted but got awarded the enhanced rate mobility and the lower rate pip I got it backdated from jan 2014 as u have to have the illness for more than 3 months so they couldn't pay me from oct 2013 . After the award my husband was entitled to apply for carers allowance and got accepted so we now get that he was on jsa but came off that and went on to income support so please look into it there is help available out there don't get me wrong it was hard at first had to go for a medical they just ask u about everyday life and how much care u need. If u need any help the best place to go is citizens advice. They helped me with all my forms x ps I am from Scotland don't if u get the same benifits in England and Wales x

Submitted by Maria on

I've had Epilepsy since I was 17 (I'm 34 now) I had brain surgery when I was about 23 & was clear for 4years but it then came bk again :-( I've been offered surgery again but I'd be awake in the Operation this time!! My seizures aren't bad enough to go through it again, I have 1 or 2 petit mals a week & about 4 grand mals a year but at least the option is always there. I'd like to thank Dr Wieshmann at The Walton Centre, Liverpool. I've been seeing him for 15years now & he has been brilliant, I'm on 3 different pills, taking 21 tablets a day but if I wasn't id be having a lot more seizures. I was upset when I had to send my driving license back but it could be worse, you've just got to 'get on with it'!! You should just live for the day and not think to far ahead or it shall stress you out.

Submitted by Emma on