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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 5 comments or add yours

Comments

I live in the US but have a friend in the UK. My seizures are not controlled by medication. They are greatly reduced in frequency though. My friend got angry with me because I am not seizure free, as I have at least one every 3 to 6 months. He said he knows 2 people who take medication and have been seizure free for 10+ months and that I should be as well, cause there has to be a medication that will do for me what it does for his friends. He says that no one in the UK has uncontrolled seizures. Is this true, if so, how is this accomplished?

Submitted by Stacy on

Hello Stacy

Not everyone in the UK is seizure free. Although the aim of treating epilepsy is for a person to be seizure free, not everyone achieves this. It is estimated that approximately seven out of 10 people could be seizure free with the right medicine though.

Maybe you could talk to your epilepsy doctor about this. This will give you chance to check that your epilepsy treatment is still the best for you.

As you are in the US, maybe you could also get in touch with the Epilepsy Foundation to find out more about US treatment options and things to talk to your epilepsy doctor about.

Karen

Epilepsy Action Helpline Team

Submitted by Karen-Epilepsy ... on

I have epilepsy and it’s controlled with medication I wish I was like the other people I feel quite different when I am around my friends I feel if they treat my differently than others/friends my Parents are the best supporting me x

Submitted by Mollie on

Do you know if there is any chance of the people in the uk being able to get the drug ‘cbd oil’ that is available in the u.s. and if not is there anything being done for the British to receive this wonderful drug as this seems to be stopping many illnesses including epilepsy. I can’t wait to be able to get it and managing to control mine because I am sure this will work.

Submitted by Lisa Kemsley on

Hi Lisa 

We are aware that in the UK research is being done to look at the safety of one component of cannabis called cannabidiol (CBD). We welcome research in to this area:

https://www.epilepsy.org.uk/about/position-statements/cannabis-research

We’ve published a number of articles about CBD research in our magazines Epilepsy Today and Epilepsy Professional that you might be interested to read. https://www.epilepsy.org.uk/research/epilepsy-cannabis-cannabidiol 

If we can be of any more help, please feel free to contact our helpline team directly. You can either by email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by rich on