A FORDINGBRIDGE mum is hoping to raise much-needed awareness and understanding of epilepsy which is not just the "cliche" shown on TV or in films. 

Amy-Jane Foster has temporal lobe epilepsy, which is affected by her hormones, which she has had since the age of 11.

She has been sharing her story to mark Purple Day (March 26) - the global awareness day for epilepsy.

What is epilepsy?

Epilepsy is a condition that affects the brain and means there is a tendency for a person to have epileptic seizures.

A seizure happens when there is a sudden burst of intense electrical activity in the brain, which causes a temporary disruption to the way the brain normally works resulting in an epileptic seizure.

Amy-Jane said: “It took me until my mid-thirties to accept myself as a person with epilepsy.

"In the past, it has led to me experiencing a lot of self-hatred.

"When I was diagnosed as a child, people in my family said ‘no, she can't have it - she's not one of 'them'’.

"It has been so hard.

"You mention the 'E' word or 'seizures' and even today it is assumed all people with epilepsy to be identical in our ways of life - all our seizures are the same as shown on TV programs or movies and it's best to avoid us, not offer a hand for help.

"A change in the attitudes of the public would help a lot.”


Amy-Jane had her first seizure when she was 11 and it was thought it was brought on by a nasty infection.

But the following year she had another one and they kept “coming more, and more and more”.

The family ended up moving to South Africa where Amy-Jane was later referred to a neurologist and diagnosed with epilepsy.

Her form of epilepsy has impacted her concentration, memory, emotions and mental health. She has also lost sight in one eye.

She says she has tried different medications over the years to help and operations, including three brain surgeries.

She also has a magnetic implant, which sends small electrical currents to her brain every one-and-half minutes to balance the electrical currents, which she describes as “trying to keep your motor running smoothly”.

The impact of having epilepsy

Having epilepsy means there are many things the 40-year-old is unable to do, like driving, and she normally goes out with someone else.

“It stops me from doing lots of things people my age should be doing but that’s how it goes.”

Loud sounds and even perfumes and types of oils can act as triggers for Amy-Jane - not simply the "flashing lights" often associated with epilepsy.

She said: "During my teen years and in my 20s particularly I had to pretend I didn't have it to try and hide away but now I've just learnt with any disability you should be proud of it.

"It is a part of you physically and mentally no matter what type of disability you have."

She says she has come across many misconceptions of epilepsy throughout her life – from family members being in denial when she was first diagnosed, to someone telling her she was possessed by the devil when she came round from a seizure.

In the past her seizures have been misinterpreted with people believing she was drunk and police being called.

Amy-Jane says epilepsy can frighten people which is why she wants people to understand more about the condition through more accurate portrayals on TV and movies, and in education at school, or even simply making information more easily available.

She recalls going to a tattoo parlour for a touch up to one of her tattoos and the fear it brought when she explained about her epilepsy.

“I think he was genuinely scared," she said.

What a seizure actually feels like

The type of seizures Amy-Jane gets are - absent seizures, simple partial seizures, complex partial seizures and tonic-clonic seizure.

“Some of the seizures I have I do walk around and my family say you ‘look like you're away with the fairies’ or I’ve had one too many.

"But for me I’m on another planet.

"All I need is for someone to sit me down and hold on to my hand and give me a sugary cup of tea or something and then I’m back on planet Earth."

She wears a medical bracelet to alert people about her epilepsy.

Describing one of her most common types of seizures, she said: “It is where I get a thump in my stomach like someone would if they are very, very scared about something. 

"It rises up from my stomach and my senses become acute, my sense of smell, taste and touch, and in my head it is as if I’m replaying four or five songs at once.

"My right eye goes completely blurred.

"I switch off for about ten or 20 seconds.

"My body produces lots of saliva or beforehand I have lots of tears.

"I’ll notice all of a sudden I’m sat on the sofa or I’m out in the kitchen.

"Then I carry on with whatever I was doing.”

When out shopping with her mum she felt a seizure coming on and says one of the employees checked to see if they were okay and if an ambulance was needed, which she says is "all you need to do".

"There is no harm in calling an ambulance or going and sitting by this person for 10 seconds and call someone for help.”

Epilepsy Action

Epilepsy Action says it is one of the most common serious neurological conditions in the world affecting around 600,000 people in the UK.

Almost one in 100 people in the UK have epilepsy and around 87 people are diagnosed with epilepsy in the UK every day.

"You don’t always have the cliches," said Amy-Jane. “Everyone with epilepsy is completely different.”

She added: "I want people to understand and accept this is not some kind of demonic disease, we're not all possessed by some kind of evil devil or something."

For more information go to epilepsy.org.uk/purple

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