Epilepsy is a well-known condition, in that most people have heard of it and know that it can cause seizures, or fits, in sufferers.
What’s perhaps less understood is what these seizures look like, and how you should act if one of the 600,000 or so epilepsy sufferers in the UK had a fit in front of your eyes.
"If you've never come across epilepsy before you probably have no idea what it looks like,” says Phil Lee, chief executive of the UK’s Epilepsy Action.
“Of course there are all the old stereotypes - people rolling on the ground, frothing at the mouth or running amok and scaring everyone. If you've never seen epilepsy before you might be forgiven for thinking that's what it's all about.”
Katie Hopkins underwent brain surgery because epilepsy has 'plagued' her life, here’s what else you need to know about epilepsy.
Epilepsy mixes brain messages
Electrical activity is happening in our brain all the time, but an epileptic siezure happens when “there is a sudden burst of intense electrical activity in the brain,” says an Epilepsy Action spokesperson.
“This epileptic activity causes a temporary disruption to the way the brain normally works, so the brain's messages become mixed up.”
Epilepsy is unique…
“There are many different types of seizure, and each person will experience epilepsy in a way that is unique to them,” says the Epilepsy Action spokesperson.
…And hard to spot
“Other than seizures, there are no real obvious ways to tell if someone has epilepsy if you don't know them. That is why it is often called the hidden condition.”
There are many causes of epilepsy
While some people may be born with epilepsy or begin to be affected very young, some people develop it later in life, perhaps as the result of a brain injury, a stroke, an infection like meningitis, or a brain tumour. In around six out of 10 people, doctors don’t know the cause of their epilepsy.
…And many triggers
Flickering lights are probably the most recognised triggers among non-epilepsy sufferers, but there are many more things that can spur a seizure. Tiredness, stress, alcohol, periods and missing meals are also all common triggers for seizures.
Epilepsy has many symptoms
Again, the most recognised symptom of epilepsy is the full-blown seizure, but most people will have symptoms before it gets to this stage, and will know that a seizure is coming.
“Some people may have a sensation beforehand, such as a strange taste in the mouth or a headache, or 'auras' which can hint at a seizure starting,” says Epilepsy Action.
Other signs include pins and needles, deja vu, stiffness, and intense feelings of fear or happiness, confusion, falling, sleepiness and loss of control of bladder or bowel. Knowing a seizure is coming can give people time to prepare – warning people near them and making sure they’re in a safe space.
“For many, however, a seizure can literally come from nowhere with no warning. Even those who do experience signs or auras may not have them exactly before the start of a seizure.”
A seizure doesn’t always mean epilepsy
Epilepsy is defined as the tendency to have recurrent seizures, and few people are diagnosed after only one seizure - five people in every 100 will have an epileptic seizure at some point in their lives, but only four of them will develop epilepsy.
Epilepsy can control people’s lives…
“When you see the lives of people affected by epilepsy and hear their stories then you will see exactly what epilepsy looks like,” says Epilepsy Action’s Phil Lee.
“It will open your eyes and inspire you. You'll see its many faces. You'll see how epilepsy can touch any part of a person's life, how it can undermine your confidence and shatter your self-esteem. How it can take away your dreams and opportunities in life.”
…But it doesn’t have to
“You can also see how people refuse to be ruled by epilepsy. How they fight back and regain control of their life. How they succeed and achieve and can be happy,” he stresses.