Epilepsy not understood by others says Wiltshire woman with condition
Jasmine Banovic says there are many types of epilepsy
A Wiltshire woman with epilepsy has told us people don't understand the impact the condition has on the lives of those with it.
Jasmine Banovic has suffered with epilepsy since she was a child - getting her diagnosis just before starting secondary school - and says there's a big stigma around epilepsy.
She suffers with absence seizures, which say says people mistake for daydreaming.
"They can be unnoticed by people if they if you they don't know that you have absence epilepsy," she said.
Jasmine explained what happens during an absence seizure: "I would blankly stare for five to 10 seconds, I could have several of these a day, and when I come out of them, I am able to re-join a conversation, but I would have missed a little period of time."
She said this was particularly difficult while at school.
"When I was at school, I remember being very confused because, I'd be learning something and then I'd be like, hang on, what have I just missed?" Jasmine said.
Rebuilding broken confidence
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 I'd stopped doing them because of confidence, so it really at the time when I got diagnosed had a knock on effect on everything," she said.
But the new medication allowed Jasmine to rebuild her self-esteem.
She said: "I started socialising more. I started at a new school where there was the support in place which was really important and, over time, that confidence built up and it was about pushing my pushing myself and getting over getting through those anxieties."
Jasmine believes there's a major stigma attached to epilepsy, saying people aren't aware of the number of different types of seizures - including absence seizures.
She said: "It's not just the seizure, it's the medication side effects it's having to manage the condition on a day-to-day basis and how that can affect your life, and I think if everybody was a bit more educated on it, it would help people with epilepsy a lot."
While her seizures are controlled by her medication, Jasmine finds herself having to explain that the medication does come with side-effects. To help control the condition, she has to manage the amount of sleep she gets as well as her stress levels to avoid a seizure.
She also thinks people assume all epilepsy is photosensitive.
"My seizures aren't affected by photosensitive or flashing lights," she said, adding: "The seizure triggers for me would be if I was particularly tired or very stressed. So I think I think that's quite an important thing to educate people on."
Awareness and cure needed in equal measure
Rebekah Smith, deputy chief executive at charity Epilepsy Action, told us its a 'complex condition'.
She told us around 53,000 people in the South West have epilepsy, with around 1 in 100 people across the UK affected by the condition, but that there's still a knowledge gap about the condition.
"It is something that despite those large numbers, people don't really understand or know a lot about," she said.
Rebekah added: "About two-thirds of people live with epilepsy under control, and so there is an element of OK, well, it's under control, so maybe I don't need to think about it, but epilepsy can happen to you at any time in your life for a whole number of reasons."
The condition is caused by a 'misfiring' of the brain and how that happens dictates the type of epilepsy you may have.
Rebakah told us it can be genetic, caused by a head injury or develop following a stroke, meaning that it can affecting anyone and everyone.
She echoed Jasmine's call for more education about epilepsy.
Last year, the charity spoke to 5,000 people with the condition about what they felt needed to be focussed on. She said there was a bit of a surprise in the responses they got.
She said: "With other conditions, it's always about supporters or find a cure. But it was a real 5050 split of you need to do that, but you also need to raise awareness."
A lot of the work they've done since has been around tonic, clonic seizures - where people may fall down and shake - but says people need to know it's more than that.
"We need people to understand more about the range of seizures and what people are experiencing and how isolating it can feel if people don't understand you and judge you," she said.