Posted 1 Jun 2020

Facts and figures about Epilepsy in the UK

Facts about Epilepsy

Epilepsy is one of the most common neurological conditions. It causes problems with brain signals that result in frequent or infrequent seizures.

A seizure is a sudden rush of electrical energy or burst that temporarily affects how the brain works. There’s a wide range of symptoms resulting from this activity and severities of seizures.

Generally, children are more likely to develop epilepsy or adults who are over 60. This is also a chronic condition, which can sometimes improve over a period of time.

Epilepsy symptoms

There are several different ways that people can be affected by seizures, which depends on the area of the brain that’s affected.

Symptoms include:

  • Fits (a period of uncontrollable shaking)
  • Tensing (the whole body will become tense and stiff)
  • Tingling feeling
  • Loss of smell or taste
  • Losing consciousness
  • Awareness (staring into space)

People can also faint or pass out and be unable to recall what happened.

Treatment for epilepsy

There are treatments that are available through the NHS which can help people to have less frequent seizures or even none at all.

Main epilepsy treatments include:

  • Anti-epilepsy drugs (most common medicine/treatment for epilepsy)
  • Surgery (remove a section of the brain causing epilepsy)
  • Diet (Ketogenic to reduce seizures)
  • Electrical device (helps to control seizures)

Treatments will vary from one person to another depending on severity. Most treatment will be for life but can be for shorter periods if seizures cease.

Epilepsy facts and terminology

Currently, there are around 600,000 people in the UK living with epilepsy. This is a similar number to the number of people diagnosed with autism, and roughly 4 times greater than people with Parkinson’s.

Facts about epilepsy

  • It is a neurological condition that can happen to anyone at almost any age
  • Every day there are approximately 87 people diagnosed with epilepsy in the UK
  • Epilepsy affects roughly 1 in every 100 people
  • Over 65’s: 1 in 4 people diagnosed with epilepsy is over the age of 65
  • Children: 1 in every 220 children will be diagnosed with epilepsy
  • Types of seizures: there are approximately 60 types of seizure
  • Social implications: people with epilepsy may suffer socially which can include loss of their driving license, job insecurity, educational issues, and social separation/anxiety
  • Mortality: life expectancy is an average of 8 years lower than the national average according to Public Health England (PHE) figures from 2018
  • People living in deprived areas are 3 times more likely to die from epilepsy according to PHE
  • Photosensitive epilepsy: roughly 3% of people with the condition are affected by flickering lights or flashing lights
  • Seizure free: Approximately 52% of people with epilepsy don’t have seizures

Terminology for people with epilepsy

According to research by the Epilepsy Society, the following are suggested terms to be used for people living with epilepsy:

  • Condition: epilepsy is not an ‘illness’, it’s a condition
  • Seizure: the term ‘fit’ is becoming less and less utilised by people living with epilepsy. The more common term now being used is ‘seizure’ and ‘epileptic seizure’
  • A person with epilepsy: people no longer wish to be called ‘an epileptic’ as it refers to them being the condition, rather than living with the condition. This is similar to the terms diabetic and asthmatic, which are also no longer deemed acceptable
  • Victim/sufferer: refers to people being helpless, rather than managing the condition
  • Grand Mal or Petit Mal: Now replaced by the medical terms which are more common, tonic-clonic and absent seizures

Epilepsy awareness events

Epilepsy awareness day (Purple Day) usually takes place towards the end of March in the UK and people are encouraged to wear purple to raise awareness for epilepsy

Epilepsy awareness week is also a national event in the UK that also promotes people to wear purple which is the color used to represent epilepsy. This event usually takes place towards the end of May each year

Epilepsy awareness month takes place in November each year and is a global event to help raise awareness for people suffering from the condition

Epilepsy charities and support (UK)

Epilepsy Society
Website: https://www.epilepsysociety.org.uk
Helpline: 01494 601400
Address: CAN Mezzanine, 49-51 East Road, London, N1 6AH

Epilepsy Action
Website: https://www.epilepsy.org.uk
Helpline: 0808 800 5050
Address: New Anstey House, Gate Way Drive, Yeadon, Leeds, LS19 7XY

Epilepsy Research
Website: https://epilepsyresearch.org.uk
Telephone: 0203 096 7887
Address: CAN Mezzanine, 7-14 Great Dover Street, London, SE1 4YR

Young Epilepsy
Website: https://www.youngepilepsy.org.uk
Helpline: 01342 831342
Address: St. Piers Lane, Lingfield, Surrey, RH7 6PW

NHS Choices – Living with epilepsy
Website: https://www.nhs.uk/conditions/epilepsy/living-with/

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Daniel Sharpe-Szunko
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