Speaking to the community
One of our community champions, Ruth, and one of our Peer Support volunteers, Tarynn, hosted a stand at Kirkstall Forge in Leeds, sharing more information and awareness about epilepsy and Epilepsy Action.
Awareness on the airwaves
You can listen back to our brilliant story champions Beth, Sophie and Robert across the airwaves today, sharing their experiences living with epilepsy. Alongside them, Epilepsy Action director of communications and digital engagement, Jon Eaton, shares more about why raising more awareness of epilepsy is vital.
Listen back:
- Capital North & West Wales (59m 42s, featuring Sophie)
- Capital North & West Wales (1h 59m 22s, featuring Jon)
- BBC Radio Sheffield (2m and 3h 10m 55s, featuring Beth)
- BBC Radio Leicestershire (1m 33s, featuring Robert)
Also marking Purple Day, PR and media manager at Epilepsy Action, Chantal Spittles, spoke to a sister station for Bradford Community Radio – Radio 119, run by adults with learning disabilities – sharing key information about epilepsy. Listen here:
Epilepsy in the news
Epilepsy is featuring across many news outlets this Purple Day, with Epilepsy Action’s survey findings shining more light on this hidden condition and the challenges and misconceptions people with epilepsy face. Here are a few:
Seizures are “the tip of the iceberg”
Beth Baker-Carey from Doncaster in South Yorkshire had been experiencing seizures since childhood but only diagnosed as an adult after suffering a six-minute seizure at college which left her in hospital.
The 28-year-old said: “It was a relief in a way to be diagnosed. I’d been living in fear and felt isolated from the world, my loved ones and myself for so long, I was extremely frightened too and it was an adjustment – I’m still adjusting.”
Beth has not let her condition hold her back and has completed a degree in forensic and analytic science, become an epilepsy advocate, launched a podcast speaking with people living with epilepsy around the world and is now developing a children’s book series aimed at helping young people better understand epilepsy.
“I just think people don’t see the everyday effects of living with epilepsy, people just think about seizures and really that is the tip of the iceberg.
“It affects everything from memory and sleep to confidence, work, and independence. For many people, it also means navigating misconceptions and fear alongside a medical condition.
“That’s why days like Purple Day are so important it’s about understanding, inclusion, and standing beside those whose battles aren’t always visible.”
View this post on Instagram
The Strategic Health Check
Podcast fans can catch our PR and media manager, Chantal Spittles, on The Strategic Health Check, talking all things epilepsy, including Purple Day, Epilepsy Action, the stories from people in our community and much more.
Host Jose Gaign is a fundraising consultant working with UK charities, and he has epilepsy himself. He shares more about his own diagnosis and reflects on how epilepsy has impacted him.
Cinema trip for Purple Day?
There will be special Purple Day screenings around the UK of new documentary film D is for Distance, exploring a boy and his family’s experience with a rare and life-threatening form of epilepsy. The film uses early cinema footage, the family’s own travel clips and artwork to tell their moving and gripping story.
Catch the film today at a cinema near you:
- Pictureville Cinema, National Science & Media Museum, Bradford
- Garden Cinema, London (including Q&A with the filmmakers)
- Depot Cinema in Lewes (including Q&A with co-director Christopher Petit)
- Curzon Hoxton
- Curzon Camden
- Curzon Kingston
- Curzon Oxford
- Curzon Canterbury Westgate
- Storyhouse Chester
If you can’t make it today, don’t worry! D is for Distance opens in cinemas in the UK and Ireland from 3 April. The BFI website has a full list of showings.
Learn more, challenge the myths
Commenting on the importance of Purple Day, Epilepsy Action’s chief executive, Rebekah Smith, said: “It’s really sad and disappointing that awareness of epilepsy still isn’t where it should be for a condition that can change someone’s life so suddenly.
“For many people, epilepsy remains a hidden condition. People may only think about seizures, but the reality is that epilepsy can affect everyday life in ways others don’t always see or understand.
“That lack of understanding can leave people feeling isolated or misunderstood. Greater awareness helps change that, creating a world where people with epilepsy feel supported and able to live their lives with confidence.
“Purple Day is a chance for us all to change that- to come together, learn more about epilepsy and challenge the myths that still surround it, helping to create a world where people with the condition are able to live life to the fullest.”
CARE in The Guardian
If you’re picking up a copy of the Guardian today, you’ll see our CARE ad showing you how to support someone having a tonic-clonic seizure.
Happy Purple Day!
It’s Purple Day – the worldwide epilepsy awareness day – and new statistics from Epilepsy Action show why it remains a really important day in our calendars.
In a poll of around 2,000 people, more than three quarters of people (78%) underestimated how many people are diagnosed with epilepsy each day. More than half of people thought fewer than 30 people are diagnosed each day, when, in reality, the number is around 79 each day.
Only 4% of people correctly identified the true figure.
In light of these findings, Epilepsy Action is launching its Purple Day awareness campaign ‘Anytime. Anyone. Anywhere.’ The campaign aims to raise awareness of the fact that the condition is common and can affect anyone at any age.
Meanwhile, in a survey of people with epilepsy, 89% of people said they still feel it’s an invisible condition to others. Epilepsy Action is working to help make everyone affected by epilepsy feel seen and create a world without limits for people with epilepsy.
Madeline and Josh shared their epilepsy stories of epilepsy in the run up to Purple Day.
View this post on Instagram
View this post on Instagram
Follow this year’s Purple Day Live Blog today for updates on Purple Day activities at Epilepsy Action and beyond.
More articles
