‘Throughout it all, there was nobody to talk to’ – epilepsy

Jade Milner from Bridlington, has set up a new epilepsy charity after being diagnosed with the condition a few years ago. Picture by Paul Atkinson
Jade Milner from Bridlington, has set up a new epilepsy charity after being diagnosed with the condition a few years ago. Picture by Paul Atkinson

When she was diagnosed with epilepsy five years ago, one of the hardest things for Jade Milner was not having anyone to talk to about it.

To make sure other people in Bridlington dont have to suffer in silence, she has set up her own charity to raise awareness of the condition.

Jade formed Purple Owl to provide training on epilepsy awareness and seizure care in schools, colleges and workplace settings.

She said: “We started up at the back end of last year. I have epilepsy and was diagnosed five years ago.

“They gave me a seizure diary and sent me off home and said ‘see you in six months to see the nurse’. I didn’t know anything about it.

“There had been a girl at school who had epilepsy and I had always associated it with learning disabilities, which is a common misconception.

“I also thought that it was something you were born with so I had no idea how it had happened.”

She was to find out that being in her early 20s meant she was in the highest risk age group for developing the disorder. People in their early 40s are another group who are prone to being diagnosed.

Jade suffered from three different types of seizures and said others have other symptoms.

Epilepsy is a condition that affects the brain and causes repeated seizures.

It is estimated to affect more than 500,000 people in the UK. This means that almost one in every 100 people has the condition.

“I had quite a lot of seizures and it affected my life,” she said. “I was off work for quite a while.”

“I had been quite poorly and it took a year for my epilepsy to be diagnosed and another two years to get the right medication to work for me.

“It is such a complex condition. The medication I take won’t help somebody else and it took a long time to get mine right.

“But thoroughout it all, there was nobody to talk to. I didn’t know anybody else who had it. It was horrendous.

“Other charities are there, but they seemed to be all about funding, and epilepsy is the most common neurological disorder there is and there was nobody to talk to.

“I would go to the specialist once or twice a year and then I would have to go to my GP who didn’t know as much, so it was difficult.”

Frustrated by the lack of information avaialble to her, Jade started doing her own research.

She said: “I Googled epilepsy and found it so many adults and children were affected that I decided maybe I should start a charity to raise awareness.

“People weren’t that supportive and had quite negative views about epilepsy, because they didn’t know what it was and what caused it.

“I came up with a presentation, working alongside the epilepsy nurse for this area, although even they have gone now because of a lack of funding.

“I started doing it in a couple of nurseries and schools because I felt it was really important. It wasn’t about first aid training for seizures but it was what to look out for.”

Originally planned just to make people more aware of the condition, Jade has now decided to try to raise money too.

She said: “I now want to raise money for the night-time seizure alarms.

“One of my friends died last year from having a seizure in her sleep. One in 500 people with the condition die from Sudden Death in Epilepsy.

“This is an opportunity to help, but they cost £1,000.”

She already knows of a teenager in Bridlington who desperately needs one of the potentially life-saving pieces of equipment.

One of the first fund-raising events will be a charity tournament with Bridlington Netball Club, in memory of a sadly-missed team-mate and friend Kellyanne Barratt.

All money raised at the six-team event will go to Purple Owl and the club are appealing for local businesses to donate a prize for the raffle or by making a cash donation so they can purchase prizes.

It will take place on Sunday, April 2, at the sports hall in Gypsey Road. To help, email Bridlingtonnetballclub@gmail.com

If anyone would like any information regarding the support groups or the seizure alarms, they can email charitypurpleowl@yahoo.com.