Meet our Youth Content Team

I wanted to join the Youth Content Creator Team because I have a lot of experience in creating content and showing my message to the world. I've done many projects to do with discrimination, many self-help videos, and I think I could contribute a lot of things to the content team.

I would like to share what epilepsy is trying to make people understand and also get more young people to join this program.

My name is Asmaa, and I'm 19 years old. I have juvenile myoclonic epilepsy, JME, and focal onset temporal lobe epilepsy. I got diagnosed with JME when I was 13, but didn't really have any seizures past 14 years old, so epilepsy wasn't really a big part of my life for a few years. Then I started having tonic clonic seizures and focal seizures when I was 17, and then got put on Lamictal, and then got diagnosed with generalized epilepsy. Then, 2 years later at 19, I got diagnosed with TLA. 

I first came across Young Epilepsy when I was scrolling on TikTok almost 2 years ago now, and this was at a time when my epilepsy was at its peak, so I was having seizures all the time. So I went from someone very independent and carefree to, in a couple of weeks, not even being allowed to walk down the street on my own. 

I first had 1-to-1 support with Alex from Young Epilepsy, who's amazing, and that changed my perspective of living with epilepsy and how I choose to speak about it to other people. I also went to the road show in Birmingham last year and met Becca and Cam in person for the first time, which I loved. The whole day was amazing, and some of the people I met there, I still speak to now. 

I went to the Manchester roadshow in March, which is my hometown, so I loved it. It was an amazing day and would gladly go to any in-person event again. 

I wanted to join the Youth Content Team because I love filming and chatting to the camera. I also spread awareness about epilepsy on my personal social media pages, so I was like, why not spread awareness with the people who help me the most? And hopefully the videos we make will encourage other young people with epilepsy and people who care for young people with epilepsy to reach out for support. 

I'm looking forward to just filming some more videos and hopefully some in-person events, but any excuse to travel down to London when I'm free. Um, but yeah, getting to meet and work with some amazing people.

Hi everyone, my name's Becca, I'm 21 years old and I suffer with tonic clonic seizures and absence seizures. So I joined Young Epilepsy when I was searching for a community and from then, it has given me the opportunity to get involved in some really cool stuff including helping to promote the charity on the season finale of TOWIE. 

I really wanted to get involved with the Youth Content Creator team because I understand how hard it can be to find that representation in the media and I can't wait to be a part of something that helps change that.

I’m Bryony and I’m 25 years old. I have Juvenile Absence Epilepsy, which mainly consists of daily atypical absence seizures. I have had seizures since I was 18 though wasn’t diagnosed until age 21, as my seizures are not visible to others.

I first became aware of Young Epilepsy when I was trying to figure out why I kept ‘zoning out’, and I couldn’t get the page on absence seizures out of my head. Later, once I had been diagnosed, I came back to it and found the Youth Voice Network in 2023.

I’ve loved being part of the YVN and have been to roadshows, taken part in research, watched the open mic night and taken part in 26 miles in 26 days 2025.

I was inspired to join the Youth Content Team because I wanted to help to make sure information that young people need is available and love being a part of the team that is making that possible.

I also love spending time with my YVN family 💜.

I joined the Youth Voice Network soon after I was diagnosed with epilepsy back in 2020 after I met some representatives at a panel I was recommended to attend with my parents by my neurologist. Since joining, I've attended meetings and found out loads of different people's stories, which led me into wanting to bring light to epilepsy amongst other struggles people go through. Currently, I am also participating in the 100 Miles for Young Epilepsy.

As I'm so passionate about people with difficulties of all kinds being heard and seen. I feel that having this opportunity written on my CV, and in a years time having made a difference to people's lives, is something that I simply cannot pass on. I would love to work in a field where I can make a difference using skills I've learnt from my media production extended diploma, such as here. I would love the chance to put my research and advertising skills to make a positive change.

Hi, I'm Elina and I'm 18 years old. I have generalised tonic-clonic seizures and absence seizures. I also get induced anxiety seizures, as well as suspected focal seizures. My epilepsy went undiagnosed until the age of 8. 

After living with it for nearly 10 years now, I have joined the charity Young Epilepsy, where I've never felt so at home and where I can meet people who are just like me. Young Epilepsy have taught me to embrace my epilepsy rather than go against it, and it's opened up so many avenues, and they've definitely helped me build my confidence. 

I became involved in Young Epilepsy when I was transitioning into the adult clinic. It was a very scary time for me as I didn't know how to navigate my epilepsy by myself. So that's when I saw this flyer and I joined Young Epilepsy, and ever since then I've been part of so many projects. 

I've got to speak on the BBC. I've spoken on a women's panel called Hear Her Voice, and I've got to raise and advocate for people with epilepsy, and it's just been such a cool thing to do because that's just who I am and that's part of my personality. 

I love creating content. I run a big social media account and  joining something like this just gave me a little bit of hope and a little bit of exposure. Sharing my story and creating funny and good content can help more young people with epilepsy.

My name is Felix, and I'm aged 14. I have focal epilepsy. I was diagnosed with epilepsy at age 8, and from there it was controlled with medication until about a year ago. From then I've been having seizures every day, but it's, it's getting better. 

I found out about Young Epilepsy through my dad's work, and I've been to two Youth Voice road shows, and I'm part of the content creators group. I was inspired to join the Youth Content Team to spread awareness and help young children with epilepsy. For this year, I'm excited to work with the content team on new social media campaigns.

I'm Jasmine. On my personal social media accounts, I edit videos to raise awareness about chronic illnesses and life with them.

I've made a few TikTok’s I’ve been really proud of as well as a few Instagram stories that have had really good engagement. I’ve of course loved all the filming I’ve done with Young Epilepsy too!

I'm Lily, and I'm 22. I have generalised epilepsy. I had my first seizure when I was 19, during my second year at university. I was diagnosed 2 months later and have experienced 8 tonic-clonic seizures since then. I've gone through multiple medication changes and I'm still yet to be seizure free. 

I first got involved by joining the Youth Voice Network, and then I became a member of the Youth Content Creator team. Since then, I ran the London Marathon, raising money for young epilepsy. I created my own Instagram and TikTok educating others about epilepsy. When I saw the Young Epilepsy Youth Content Creator team, it was a perfect opportunity to make content with other young people with epilepsy. 

I'm looking forward to creating content to promote the Youth Voice Network roadshow.
 

I'm Marlie and I wanted to join the Youth Content Creator Team because I enjoy filming videos about my epilepsy, and it would be an amazing opportunity for me to join a group of people who also enjoy talking about their epilepsy and spreading awareness, as it is something really important to me. It's an amazing thing for people to be able to have the confidence to talk about, even when some people feel insecure about it, and spreading that awareness that you shouldn't be ashamed of it is an amazing thing to do.

I would like to share a message with the world about how not all seizures are the same, and to talk about not everybody's seizures are the stereotypical tonic clonic when you first talk about your seizures. I would also like to share that not everybody with epilepsy can't do everything. Everybody with epilepsy can mostly live a semi normal life. 

I think this is very important for people to know, and I would also like to share how to deal with different seizures because it's not very spoken about much, and some people just don't know how to react when somebody's having a seizure or how to identify a seizure.

My name is Matthew. Using iMovie when I had an iPhone, me and my brother a few years ago would take a video of us fighting a lightsabre fight from Star Wars. Afterwards, I would go through the video slide by slide turning the plastic lightsabres into real lightsabres with the sounds as well. What made me really proud of them was for the hours that I spend editing the videos turning them into our own Star Wars fights and the look on peoples faces, the reactions they gave. That give me the feeling that every single second was worth it, so much so that I made many.

I only have my personal experience with editing and photography, but I know and I know that the photos that I have taken show that I am very talented with photography.

My name is Mona and I'm 19. I have temporal lobe epilepsy. I got epilepsy when I was 6 years old and I currently suffer from a very rare seizure called parietal water drinking seizures, and it's basically when I have a seizure, I have the urge to drink water. 

I became involved in Young Epilepsy because I wanted to interact and socialize with other people with epilepsy, and I have been involved in a few projects and currently I'm on the editorial panel. What inspired me to join was the fact that I would be able to share my own ideas on how to spread awareness on epilepsy. 

Our current focus is social life with epilepsy, and I'm doing a project where I am writing about my own personal experiences, so I'm looking forward to sharing that with the team.

My name is Nana Ama and I have just turned 26 but I have been part of the Youth Content Team since I was 25 years old. I have generalised epilepsy and I have tonic-clonic seizures during the day time. 

I started having tonic-clonic seizures when I was 15 years old when I came back from a family holiday but they were very infrequent. I then had a massive breakthrough seizure during my undergraduate degree which ultimately led to me being finally diagnosed with epilepsy a few years later. As of now, I am currently on treatment for my tonic-clonic seizures and have been seizure-free for a few months! 

I became involved with Young Epilepsy because I wanted to meet people who also had the same condition as me. I did not know anyone in my real life who had epilepsy so I wanted to get to know people who had similar lived experiences to me. As I became a part of Young Epilepsy, I have become a part of the Youth Voice Network and attended a meetup in Central London and learned more about the work Young Epilepsy do to educate professionals and ordinary members of the public. 

I became inspired to join the Youth Content Team because I love to write and I wanted to write as a way to tell the world about my experiences and the impact they have had on me. Another reason for joining was so that I could become a part of a bigger community and I have now! I am looking forward to seeing the launch of The Channel and further engaging people in understanding the social aspects of epilepsy as well. 

My name's Ree and I'm 27 years old. I have juvenile myoclonic epilepsy, which is also referred to as JME. 

I had my first tonic-clonic seizure at my granddad's 60th birthday party. Before this, I'd had some absence seizures, but from this I had an MRI and an EEG which diagnosed my epilepsy. I had some myoclonic jerks that would still happen, and I was on topiramate for 10 years. But now I'm on lamotrigine, and I'm doing much better, although I'm dealing with my bad memory. 

It was at my granddad's 60th birthday party that I had my first tonic-clonic seizure. From there I had an MRI and an EEG which diagnosed my epilepsy. I was on medication for about 10 years, but I actually changed that about 2 years ago, and now I'm just managing my memory, my fatigue, and all the other joys that come with epilepsy. 

I first became involved with Young Epilepsy when I was having quite a difficult time myself, so I got online and I found a youth voice group, and I thought, this sounds incredible. Since then, I've been involved with some really cool projects, so I've been able to join the flare sessions where we talk about what the Department of Education can do for young people with epilepsy. I've also been to some talks to different boards and different organizations. 

I was involved with the road show last year, and now I'm getting to be involved with content, so there's just absolutely loads you can get involved with. I was inspired to join the Youth Content Team because I've always wanted to be able to shape the kind of messaging that goes out there for epilepsy. I've wanted to use my lived experience to help create content that I've not seen before. 

I've wanted to work with other people in the content team, maybe that are younger than me, older than me, have different experiences, just so we can make sure that what's getting out there is what's really needed. I'm really looking forward to speaking about mental health around epilepsy, especially in young people, and with that, I'm excited to maybe post some content that you usually wouldn't see about taboo topics such as sex and relationships and how epilepsy impacts this. And I'm also really looking forward to being able to share the complexity and diversity of epilepsy.

I have enjoyed being part of the Youth Voice Network and have tried to join as many online meetings as possible. I have been part of the Neuronostics focus group and also was part of the app development project. The Youth Voice Network has helped in boosting my confidence to speak to others and giving my own thoughts and opinions.

I wanted to join the Editorial Panel because I like to help others and have always been an empathetic person. I am curious, creative and have a good imagination. I'd like to plan a feature for The Channel, about other features/symptoms of Dravet syndrome and giving advice on managing some of the features of Dravet syndrome

Hi, I’m Tala and I’m 23 years old. I have Tonic clonic seizures (both day and nocturnal) and occasional absence seizures. 

I had my first seizure when I was 16, and while the doctors wanted me on medication, I wanted to wait until I had another seizure. One month later I had another one and was diagnosed with epilepsy. However they couldn’t diagnose the type until someone recorded my seizures, which my family felt was uncomfortable and wrong. 

I was in denial at first and I didn’t even want to tell the rest of my family. It made me feel scared as I didn’t know much about it and how it would affect my life and my family’s life. The hospital visits weren’t very supportive and because I wasn’t really considered a child they just told me to take the medication and get on with my life, meaning that the transition from child to adult care wasn’t anything great. I had to do it by myself and without the help of my previous medical staff. I wasn’t given any links to mental health support or any extra information. 

It wasn’t until I had gone to university that I started to feel more independent and I had finally gotten some support through them and a friend who also had epilepsy. Although I did make it through to the end of uni, I had a serious seizure when I was leaving to travel back home from Wales to London. It lasted hours and it greatly affected my mental health. Especially when I got back home after being unconscious for 5 days and I could barely walk and it was like I lost my independence all over again.

It was a few months after that when one of my sisters recommended Young Epilepsy to me. I joined in 2025 because she said it would help me get back on my feet and meet other people like me. It was amazing how much I changed and became happier after I joined. Suddenly I didn’t feel so alone anymore. And after not having anything to do for months, I could finally contribute to a charity that is meaningful to me, and I was glad I could be useful. I helped by being one of the people to answer questions for younger kids with epilepsy, and I even went to parliament to speak up for the importance of help in schools for young kids with epilepsy.  

I am now on the young editorial panel alongside many other great people. It is important to share your views and experiences when other people might be scared or not able to share their voice. That is why I joined, and I also want to make sure the topics for young people and young adults are shared, and the families or them. As it is important we include the impact on the families. 

I am looking forward to contributing all our ideas and seeing what the end result is. I can’t wait to see everyone’s contributions make a difference, and I’m glad to be a part of it.