Early this year we discovered that 1 in 5 people with epilepsy don’t feel comfortable talking about their condition, even to their friends. We want to change this, and one of the best ways to do it is to tell epilepsy stories in the media. Around Purple Day and during National Epilepsy Week, over 30 Epilepsy Action media volunteers spoke out about their epilepsy in the print, online and broadcast press.
Torie was interviewed on BBC 5 Live, Derrick, who made his own YouTube video, was interviewed on London Live and BBC Radio London. Craig’s story was featured on ITV Central and he was interviewed on BBC Radio Nottingham. Katie’s story appeared on Closer Online, and Vicky’s blog was published on the Huffington Post.
Stacey McClean from S Club Juniors lent her voice to the campaign. She shared her mum’s epilepsy story and the impact it’s had on her family.
Over the course of the campaign, we reached over 13 million people. We really hope that we have encouraged more people to speak out about their epilepsy, and have shown the world that having epilepsy is nothing to be embarrassed about.
The campaign has been shortlisted for a Charted Institute of Public Relations award and we couldn’t have done it without your help.
Torie - “the more you speak out to help people understand, the easier it will be.”
Sometimes, our media volunteers get to do really exciting things! This National Epilepsy Week, Torie Robinson got to go to BBC Broadcasting House to be interviewed on BBC Radio 5 Live. Even though it meant a very early start, Torie really enjoyed the experience:
“I didn’t really speak about my epilepsy growing up and it was hard for even my family to understand what was happening to me. I don’t think my parents took it seriously until I had my first tonic-clonic seizure and then they realised something was wrong. It wasn’t until I went to university that I decided to be completely open about it and it really made a difference.
“This National Epilepsy Week, I replied to an email saying that I wanted to tell my story in the media. Chantal in the press office contacted me and asked if I wanted to be interviewed on BBC Radio 5 Live. I jumped at the chance! I had to get up really early in the morning to get a taxi to BBC Broadcasting House as we were going to be on air at 6.30am! Being in the studios was really exciting, and it was great to meet Chantal too.
“The presenter was really friendly and really interested in hearing my experiences. I am really glad that I had this opportunity. My message to others would be to not to let people’s ignorance hold you back and to be part of people’s education. Ignorance certainly isn’t bliss and the more you speak out to help people understand, the easier it will be.”
If you would like to become an Epilepsy Action media volunteer and share your epilepsy story, we’d love to hear from you.