Katie’s Story

Katie Davies, 23, from Wales has been recognised with an Epilepsy Star award for her incredible awareness raising and commitment to the epilepsy community.

Katie was diagnosed with epilepsy in 2008 following an inflammation on the brain, which is known as encephalitis, and has lived with the condition since. She explains what living with epilepsy is like for her and why raising awareness about the condition is so important.

“Recently, I’ve been having absence seizures where I repeat words over and over and can’t remember anything. I’m left feeling confused and drained after I have a seizure but there are lots of other daily challenges that come with epilepsy. I struggle with memory loss and sometimes need to be reminded of things because of this. I try to keep things in the same place so I know where they are (most of the time!).”

Katie has recently opened up about her epilepsy on social media. She said:

“I love sharing things that I’ve learnt over the past 14 years while living with epilepsy, but I also think it’s important to show that everyone’s epilepsy journey is unique. I’ve had people telling me that they’ve learnt lots from the things I share which is really nice to hear.

“I often get asked, “Is epilepsy like what I see on the soaps on TV?”, which usually just show tonic clonic seizures. Absolutely not. There are so many different seizure types and everyone’s experience of epilepsy is so different. Also, epilepsy isn’t just about seizures. It can affect so many different parts of life.”

“On my eighteenth birthday, I had a seizure whilst I was out for an evening meal with friends. Thankfully they knew I had epilepsy and could have a seizure at any time and so they knew what to do. They instantly phoned my parents who were able to take care of me.”

Epilepsy Action Cymru has played an important role in Katie’s epilepsy journey and has been there to help her open up about her condition.

“I’ve been going to the Epilepsy Action Talk and Support groups for a few months now and I personally think they’ve really helped me to speak more openly about my condition. Speaking to others who are going through something similar has really helped.”

“I’d tell anyone who’s newly diagnosed with epilepsy to give Epilepsy Action a call. They’re there for absolutely anyone and they are always there as a helping hand.”

Working alongside Epilepsy Action, Katie shared her experiences in a documentary called ‘Epilepsi a Fi’ for S4C. This was a big step for Katie but she found the experience to be a positive one. She said:

If anyone is feeling unsure or nervous about talking about their epilepsy, just think that raising awareness can make a huge difference. Epilepsy can affect anyone and not everyone who has epilepsy is born with it.”

Katie’s friend, Kelly Cavanagh, was one of the many people who nominated her for the award. She said:

“Katie has lived with epilepsy from childhood. She was hospitalised as a child and her were parents told she wouldn’t reach milestones. However, she has always pushed hard to achieve her goals and always, always has a smile on her face and is encouraging others.

“Katie, you are an inspiration to all around you. You never complain and always have a beautiful smile on your face. You are beautiful, strong, kind and the world would be a better place if there were more people like you. Don’t ever change.”

Accepting the award, Katie said:

“I couldn’t believe I was given the award and it came as a lovely surprise. I totally didn’t expect to receive it and will be something I’ll cherish forever. I’m really grateful to all the friends and family who kindly nominated me for the award, some from as far away as America. It means so much.”

Jan Paterson, Epilepsy Action Cymru manager, said:

“We’re over the moon to give this award to Katie who has shown real commitment to people with epilepsy by sharing her own experiences and offering a listening ear. Katie today is a great ambassador and support to her local Talk and Support group. She’s always positive and always offers support to group members struggling with their epilepsy. Seeing Katie speak more openly and spread awareness about her condition over the past year has been fantastic and now it’s time for her to shine like a star.”