Epilepsy misunderstood by others says Wiltshire woman has condition

Jasmine Banovic says there are many types of epilepsy

A Wiltshire woman with epilepsy told us people don’t understand the impact the condition has on the lives of those with it.

Jasmine Banovic has suffered from epilepsy since she was a child – she was diagnosed just before she started secondary school – and says there’s a big stigma around epilepsy.

She suffers from absence seizures, which she says people mistake for daydreaming.

“They can go unnoticed by people if they don’t know you have absence epilepsy,” she said.

Jasmine explained what happens during an absence seizure: “I would stare blankly for five to 10 seconds, I might have a few of these a day, and when I come out of them I can re-enter a conversation, but I would miss a little bit of time.”

She said this was especially difficult during school.

“When I was in school, I remember being really confused because I’d learn something and then I’d be like, wait, what did I miss?” Jasmine said.

Rebuilding broken trust

It wasn’t until she was in her mid-teens that Jasmine found a medication that helped control her seizures. But her confidence had been shattered by this point.

“Before I developed epilepsy I had a lot of hobbies and stopped doing them because of confidence, so the moment I was diagnosed it had an effect on everything,” she said.

But the new drug allowed Jasmine to restore her self-esteem.

She said: “I started socializing more. I started at a new school where there was support that was really important and over time that confidence built up and it was pushing me to push myself and push through those anxieties. .”

Jasmine believes epilepsy has a major stigma, saying people are unaware of the number of different types of seizures – including absence seizures.

She said: “It’s not just about the seizures, it’s about the side effects of the medication that you have to manage the condition on a day-to-day basis and how it can affect your life and I think if everyone was a bit more educated about that , would help people with epilepsy a lot”.

While her seizures are controlled by her medication, Jasmine finds herself having to explain that the medication has side effects. To help control the condition, she needs to manage the amount of sleep she gets as well as her stress levels to avoid seizures.

He also believes that people assume that all epilepsy is photosensitivity.

“My seizures are not affected by photosensitive or flashing lights,” she said, adding: “Seizure triggers for me would be if I was particularly tired or very stressed. So I think that’s a pretty important thing to educate people about. .”

Awareness and healing are equally necessary

Rebekah Smith, deputy chief executive of the charity Epilepsy Action, told us it was a “complex condition”.

She told us that around 53,000 people in the South West have epilepsy, with around 1 in 100 people in the UK affected by the condition, but that there is still a lack of knowledge about the condition.

“It’s something that, despite these big numbers, people don’t really understand or know much about,” she said.

Rebekah added: “About two-thirds of people live with their epilepsy under control and so there’s an element of OK, well, it’s under control so maybe I don’t have to think about it, but epilepsy can happen to you at any time in your life for any number of reasons.”

The condition is caused by a ‘wandering’ of the brain and how this happens dictates the type of epilepsy you may have.

Rebakah told us it can be genetic, caused by a head injury or develop from a stroke, meaning it can affect anyone and everyone.

She echoed Jasmine’s call for more epilepsy education.

Last year the charity spoke to 5,000 people with the condition about what they felt they needed to focus on. She said there was little surprise in the responses they received.

She said: “With other conditions, it’s always about advocates or finding a cure. But it was a real 5050 split, you have to do that, but you also have to raise awareness.”

Much of the work they’ve done since then has been around tonic, clonic seizures — where people can fall and shake — but he says people need to know there’s more to it than that.

“We need people to understand more about the range of seizures and what people are dealing with and how isolating it can feel if people don’t understand you and don’t judge you,” she said.

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