We fight to improve the lives
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 8 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

Thank You

Submitted by Mrs Liz Storey

Hi, I have been managing epilepsy now for approx 37 years, had spells where it has been well managed and also bad spells of recurrences where my body endured 13 generalized seizures within 24 hours amid other seizures. I am glad and lucky to be able to be here and value every day.
A statistic you mentioned above quotes "PHE also found that people with epilepsy are three times more likely to die from their condition if they live in a deprived area."
My question is what is being done to reach out to these people to offer them support, to assist with adjustment of lifestyle and help with their management of their condition. In my experience, having the condition was one thing, but to get any kind of support one had to seek it out, not something many would want to do, but instead we kind of get used to living with it, often in silence, sometimes alone. More needs to be done. The ironic thing is I reached out to the Epileptic Society several years ago to volunteer my services in any way that I could, I followed the request to ring around and left the relevant messages but to no avail, not even a phone call back. Frustrating!

Submitted by David Abbott

I am a 51 year old female that just found out I have Motor Neuron Disease Parkinson's about a year and half, but I have been having signs of it for years, tremors, depression, body weakness. ECT. I honestly don't think my doctor was reading the signs because of my gender and age. A few years ago I had my shoulder lock up on me and I was sent to a P.T since x-rays didn't show any physical damage. My shaking was getting worse and I began falling. Only when my speech became so bad that it brought concern to my dentist was Parkinson's even considered. He phoned my doctor with his concerns about my shaking and balance problems. By this time I was forgoing shots in the back of my neck for back and neck pain to which once again I was sent to a P.T (although x-rays showed no damage) I was told I had a few spurs which were most likely causing the pain. Here I was feeling like my whole body was falling apart and doctor could not find anything wrong, maybe in was all in my head? My doctor even seemed annoyed with me and things just kept progressing and I just kept it to myself, why bother going through testing and them finding nothing? Well, it was after my second P.T called my doctor about the weakness in my legs and arms, by this time I have developed a gait in my walk and I fell more frequently. Only then did my doctor send me to a specialist and it was found that I had Parkinson's, and that I have had it for awhile. I think because I was a woman that my signs and symptoms weren't taken seriously and therefor left untreated for so long,I was taking pramipexole dihydrochloride three times daily, I Was on carbidopa levodopa but only lasted 90 minutes then wore off.I found that none of the current medications worked effective for me.I got tired of using those medication so I decided to apply natural herbs formula that was prescribed to me by my second P.T, i purchase the herbal formula from totalcureherbsfoundation. com, There has been huge progression ever since I start the treatment plan which will last for 15 weeks usage.all the symptoms and sign has begin to disappear .

Submitted by Carlos benita

I am 32 years old and had my first seizure when I was 7 ,, since then my seizures have got worse as ive got older. There is no support from neurologist or epilepsy nurse just continuous medication changes witch make me fit more and encourage changes in my fits ,, from awake choking fits to being totally unaware of where I am ,, I cant breath and have head pain all the time , , my doctors say I have to pay for a vitamin witch could potentially stop me from slipping into deep depression. The health services or the government do not want to do anything to help epileptics ,, when it comes to fireworks flshing and banging is not good at all, they should be ban !!!! It seems that electrical technology and phones computers are all encouraging young developing brains to go wrong and nothing , no laws no rules no ban ,, the government stinks !!!!

Submitted by victoria wroe

I have had epilepsy for about 50 years ,I have recently been in touch with the Univesity of Sydney Australia because they
have been awarded a grant from Microsoft to help them to
develop a seizure warning system, this would help in many
ways to stop the feelings of being a prisoner many times, they would feel so much more independent,and their familie s
would not be so concerned about their safety. It does seem
that not much is being done in the UK. I have been in touch
with several Universities but the answer is lack of funds .
Surely someone in this country could help us to feel that help is
at hand, epilepsy has been present for thousands of years.
Doesn't any one have the thought that this warning system
would save the NHS money over the years by giving people the
chance to stop the falling and injuries that happen so
frequently .At the age of 80 I would quite willing to pay for a
gizmo to wear on my wrist but this not being worked on
with the enthusiasm that the visible handicaps are given ,
so many people have this problem but are unwilling to talk
about it .The stigma attached frightens them WHY ? I tell
everyone I can, result people saying they know some who
has it . Yes there is a great deal of epilepsy present ,Please
say a little more I think they might be a little bit surprised.

about

Submitted by Margaret Manton

I hope my email has helped few people to talk to people a little more freely about epilepsy .Perhaps more help would be given the more people know about it.
13

Submitted by Margaret Manton