A CAFÉ owner from Dursley has started her own campaign to raise awareness of epilepsy, so that the potentially fatal condition is no longer treated as a “dirty little secret”.

Suzi Abraham, who runs the Hummingbird Café in Parsonage Street, Dursley, was diagnosed with epilepsy aged three and says there is a lack of information available on the condition, especially for people want to be active with sport and exercise.

Mum-of-two Suzi, 45, a keen runner, has set herself a target of raising £3,000 for the Epilepsy Society by October 2020, and increasing public knowledge of the condition, and she will take on a huge list of challenges including the Newport marathon, Cardiff half-marathon and paragliding.

Suzi had her driving licence taken away by the DVLA after suffering two seizures whilst training for her second marathon this year, and she says this experience inspired her to find out more about how people with epilepsy can safely stay active – but she was disappointed by how little research and advice is available.

“I want people who want to exercise and follow a particular career to be able to do that despite having epilepsy, and I want everyone to understand how epilepsy affects people and that we are not weird,” she said.

“Epilepsy is treated as a dirty little secret. People assume it means you can’t do lots of things. I was diagnosed at three and very little was known about the condition then, and it’s still the same now.”

She explained how in one US state, Missouri, people with epilepsy were banned from marrying up until as recently as 1980. “It just shows how much it’s misunderstood,” she said.

Suzi also believes that the severity of epilepsy is underestimated by the general public.

“The worst case scenario is SUDEP (sudden unexpected death from epilepsy),” she said. “My own worst experience was as a teenager at school: I was alone in the toilets and had a seizure and hit my head on the sink and then the tiled flood. If you hit your head hard enough, you could die.”

Around 1,000 people die from epilepsy every year in the UK, and around one in 103 people have the condition. “That’s a similar figure to people living with autism and four times the number of those living with Parkinson’s,” Suzi said, “but there isn’t the same level of awareness and research for epilepsy.”

Suzi said that if she could speak directly to the next Prime Minister of the UK, she would say: “Put more money into research for epilepsy.”

Suzi said that the stigma around epilepsy and myth that the condition means “you can’t have a normal life,” needs to end.

“I’ve been lucky to lead a normal and active life,” she said. “I run a business, have a family and am able to keep active, and I want that to be the case for as many people as possible with epilepsy.”

For more information on the condition, see epilepsysociety.org.uk

To donate to Suzi's campaign, see justgiving.com/crowdfunding/suzi-abraham