I saw that Epilepsy Action were looking for young people with epilepsy to join an advisory group in helping design a new resource and knew instantly that I wanted to be involved. In the first meeting there were roughly 15 people who had travelled from all over the country to help with the project. It was great to meet with so many other young people with epilepsy and it made me realise how common the condition is.
We were put into small groups and given a few activities which involved talking about how our epilepsy affects our everyday lives and what resource we thought would be best to help young people in the future. Almost every person had a smartphone and used them to access the internet regularly so the main two ideas were an app or a website with information tailored for our age range.
"I really enjoyed being part of the project because it was going to help other young people struggling with similar issues that I had encountered when I was diagnosed."
There were three sessions in total and during these we were given more activities which helped us think about what content would be most helpful. When I was first diagnosed with epilepsy I used the Epilepsy Action website to help me find out more information about my seizure type and how to manage my seizures. Although this was helpful, I knew that as a young person I was going through some slightly different issues compared to other people and some of the content wasn’t applicable to me.
All of the young people agreed that a new platform would be useful and we were given a task to design a web page structure that would be most appealing to us. By this point, the majority of people said they would prefer a webpage over an app due to memory storage on phones and accessibility. For the content, everybody wanted reliable information in short sentences that were easy to digest. We liked interactive websites with a range of videos, blogs and images so definitely wanted that incorporated.
After Epilepsy Action knew what would be best for our age group they started to design the website and we got the opportunity to give feedback at every stage, it felt like our input was valued. I joined the project team, working with Epilepsy Action staff to develop the site from an idea to the reality. I really enjoyed being part of the project because what I was doing was going to help other young people struggling with similar issues that I had encountered when I was diagnosed.
Before this project I had never met anybody who also had focal seizures and it was good to be able to speak to someone who had similar seizures to myself and share stories with everybody. I could relate to a lot of the stories people were sharing and it felt like the whole group bonded over this. I also wrote some stories to feature on the site about my experience to help other young people.
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