'Epilepsy support group opens whole other world'

Anya Roberts, 27, was diagnosed with epilepsy as a baby

An epilepsy group offers a chance to share the "positives and negatives" of living with the condition and reduce isolation, its founder said.

Anya Roberts, 27, was inspired to set up the monthly Purple Circle gathering after learning that there wasn't already a service in York, with the nearest group located 25 miles away.

Ms Roberts was diagnosed with epilepsy at three months old and said while she's "never really known life" without the condition, it was "refreshing" to meet and exchange stories with people that had different experiences.

"Having that conversation with someone who also has it and knows how it feels is a whole other world," she said.

Epilepsy is a condition that affects the brain and nervous system, causing repeated seizures.

Originally from Anglesey, North Wales, Ms Roberts said growing up, it was rare to meet other people with the condition or to be able to access support and advice.

After moving to York in 2016, she was surprised to discover that there wasn't a larger support network in place.

"I think I just assumed that because it was a city, and I come from such a small community, that in a bigger area there would be something available," she said.

"I did wonder if there was other people around York that had epilepsy and needed that support."

After downloading a pamphlet from Epilepsy Action, the charity helped her set up the first session earlier this year.

Emily Marshall-Ngan, team leader at the charity, said independent groups helped people to "take control of the narrative and support that was relevant to them".

"A lot of people who are living with epilepsy tell us they feel isolated and misunderstood, so creating that space for them to come together can be a huge comfort," she said.

"We're absolutely there to help support people, but it doesn't happen without people like Anya coming forward and leading on that."

Ms Roberts said she wanted meetings to have a relaxed and approachable atmosphere

Ms Roberts said her intention wasn't to make the meetings too "intense" or solely focused on sharing experiences that could "make people uncomfortable".

"I wanted people to be able to share both the negatives and positives, but also just feel like they were having a natter with a group of friends," she explained.

"I wanted a relaxed atmosphere and approachable group."

Ms Roberts feels that members have resolved some misconceptions around the condition and discovered common experiences.

"It's been quite refreshing meeting people with different experiences and seeing different points of view too," she said.

• BBC Action Line: Information and Support - Epilepsy

She said she was eager to spread greater awareness about epilepsy, its lesser-known symptoms and living day-to-day with the condition.

"You do have that drowsiness, that memory loss, issues with mental health and feeling very misunderstood," she explained.

"You have life in-between the seizures that nobody knows about, which is so frustrating."

Ms Roberts added: "People assume it's to do with flashing lights and seizures - and that's as much as they know because there's next to no awareness.

"The seizures are the punctuation and the epilepsy is the narrative."

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