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of everyone affected by epilepsy

 

Epilepsy facts and terminology

There are 600,000 people with epilepsy living in the UK. That’s a similar figure to people living with autism. And four times higher than those living with Parkinsons.

Epilepsy facts

  • Epilepsy is a serious neurological condition that can affect anyone, at any age and from any walk of life.

  • Epilepsy affects around one in every 100 people in the UK. Every day, 87 people are diagnosed.

  • One in every four people newly diagnosed with epilepsy is over the age of 65. One in every 220 children will have a diagnosis of epilepsy. That’s an average of one child with epilepsy in every primary school and 5 in every secondary school.

  • There are around 60 different types of seizure and a person may have more than one type. Seizures vary depending on where in the brain they are happening. Some people remain aware throughout, while others can lose consciousness.

  • The consequences of an epilepsy diagnosis are severe and wide-reaching. Diagnosis can result in the loss of a driving licence and loss of employment.  It can also affect someone’s education and employment prospects, and lead to an increased degree of social isolation.

  • For some, seizures are life-threatening: 1,000 people die in the UK every year because of their epilepsy. As many as 400 of these deaths could be prevented. Around half of these 1,000 deaths are from sudden unexpected death in epilepsy (SUDEP), in which someone with epilepsy dies and no obvious cause of death can be found.

  • Deaths in people with epilepsy have increased by 70% and people with the condition now die on average eight years earlier than the rest of the population, according to new figures from Public Health England (PHE), published in February 2018.

  • PHE also found that people with epilepsy are three times more likely to die from their condition if they live in a deprived area.

  • Photosensitive epilepsy affects 3% of people with epilepsy. In this type of epilepsy, seizures are triggered by flashing or flickering lights, or some patterns.

  • Only 52% of people with epilepsy in the UK are seizure free. It is estimated that with the right treatment, the majority of people with epilepsy (70%) could be seizure free. This 18% treatment gap equates to 108,000 people in England with epilepsy who could be seizure free, but currently are not.

Suggested terminology

  • Feedback from people with epilepsy suggests the following as more positive or preferred ways of referring to the condition. Please feel free to ask us for further guidance.

  • ‘Illness’: epilepsy is a condition, not an illness.

  • ‘Fit’: the term ‘seizure' or ‘epileptic seizure' is preferred by many people. However, some people with epilepsy still choose to use the word ‘fit’.

  • An ‘epileptic’: it is important to look at the person before the medical condition, therefore it is more helpful to say ‘a person with epilepsy'.

  • A ‘victim, sufferer’: this implies someone is helpless.

  • Grand Mal or Petit Mal are terms previously used to describe seizure types, and have now been replaced in medical terminology.
  • Updated September 2018
    To be reviewed September 2020

Comments: read the 3 comments or add yours

Comments

Hello,

I do not have epilepsy, but I am researching for a book I am writing concerning the detrimental health impacts that random fireworks detonations have upon people. Yesterday I found out that fireworks can trigger seizures for some people with epilepsy. Therefore, I would appreciate it enormously if you could direct me towards any references for valid research or case studies or personal stories from individuals who have had seizures because of either fireworks noise or flashing lights. Thank You

Submitted by Mrs Liz Storey on

Hi Liz, thanks for your comment. If you'd like Epilepsy Action to help you with your research, all the details you need are on this page: https://www.epilepsy.org.uk/research/resources

All the best,

Josh

Submitted by Josh - Epilepsy... on

Thank You

Submitted by Mrs Liz Storey on