Meet some of the members of the Youth Voice Network

I’m Joe, I’m a 23 year old graduate from the University of Nottingham, having got a BA in English and an MSc in Psychology. I currently work at the Students’ Union there as the Activities Officer - I basically have fun looking after societies and running events!

I have had epilepsy since I was 12. My seizures have been controlled by lamotrigine, and I haven’t had a seizure since I was 21.

My first Young Epilepsy project came when I wasn’t a Young Rep - I ran the London Marathon for them when I was 18, raising over £4,000 in the process! Since becoming a Young Rep, the best moments have been when I was heavily involved in our £150,000 funding bid from the Garfield Weston Foundation, when I was on a podcast with Dr Hilary and when I was filmed for some promo content (I see my face everywhere now!). I’m also now a Young Trustee at the charity.

I’m interested in understanding how epilepsy affects mental health, life at university and SUDEP.

Hiya, my name is Annie. I suffer from absences and complex partial seizures. In 2019 I had brain surgery to remove a cavernoma, which has reduced my seizures. Using social media and my blog, I do my best to raise awareness about epilepsy and I put my all into helping Young Epilepsy do this too. I'm grateful to work a full-time job in marketing from home, which allows me independence despite my disability.

As well as becoming a new Young Trustee, Annie has been involved in lots of exciting projects including a great interview with consultant paediatric neurosurgeon at Great Ormond Street Hospital, which you can watch here: https://thechannel.org.uk/treatment/young-epilepsy-meets-consultant-neurosurgeon-martin-tisdall

My name is Zaid I am 18 years old and I am a Young Rep for Young Epilepsy. I have a passion for raising awareness for epilepsy and helping others with the condition, as I was diagnosed with epilepsy at eleven years old. Epilepsy did have a huge impact on my life but it didn’t stop me from fighting back and going on to study mental health nursing which has always been an interest of mine. In my spare time I work with the local council as a youth health champion and a mental health ambassador.

Zaid has been involved in lots of projects including sharing his experiences of epilepsy healthcare with the NHS to help improve services.

I am a 23 year old politics student living with epilepsy. I was diagnosed at the age of 19 and have now been seizure free for two years. Recently getting my driving license back was a huge achievement for me after struggling to control my epilepsy for so long. I have learnt a lot from living with epilepsy and it has shaped me as a person. While I am scared of having seizures and stuff struggle with some anxiety, I would not change my diagnosis as it led me to becoming a Young Rep.

Alice has been involved in lots of exciting projects as a Young Rep and recently supported our #OnTopOfEpilepsy campaign by writing a letter to her local healthcare leaders sharing her experiences and asking for improved mental health support for children and young people with epilepsy.

My first seizure was when I was six and I don’t have any triggers so they can be unexpected at times. Most of the time, my epilepsy is well controlled however I did have clusters of them around GCSES so have learnt many ways to handle exam stress

I’m now 20 years old and in my third year studying at Newcastle University, After my diagnosis of epilepsy, I wanted to know more about my condition so became a participant in the 100K Genome Project to learn more about the genetics of my diagnosis. Because of this, genetics is now an interest of mine and I am now considering becoming a doctor in clinical genetics due to this.

I am a huge advocator of encouraging the voice of the youth and hope to do this as well as helping to get rid of the stigma around epilepsy!

Anoushka has been involved in lots of exciting projects as a Young Rep and recently supported our #OnTopOfEpilepsy campaign by writing a letter to her local healthcare leaders sharing her experiences and asking for improved mental health support for children and young people with epilepsy.

Hi, I’m Ellie and I was diagnosed with epilepsy on my 18th birthday. Before my epilepsy was controlled by medication I had very severe tonic clonic cluster seizures which meant I basically lived in A&E whilst at uni. I always wanted to be an actor and at points epilepsy made it feel like an unattainable dream. Thankfully, I am now fortunate to work professionally as an actor and hope that through working with Young Epilepsy, I can help other young people see that anything is possible!

Hi, I am Steven, I’m 24.  I have tonic clonic seizures and absences which are mostly controlled by medication. I try not to let epilepsy define me, try to live life to the full. I enjoy being a Young Rep and being part of a great team raising awareness.

Steven has been involved in lots of exciting projects, including the voice over for this epilepsy informational animation, which you can watch here: https://thechannel.org.uk/basics/so-what-epilepsy

I’m Sacha and I am 24 years old and studying to become a nurse. I was 16 when I was first diagnosed and with a lot of trial and error with drugs I think I am finally at a place where I am starting to become more independent. I am passionate about spreading awareness of epilepsy and making sure there is the best possible support for young people.

Sacha has conducted lots of interviews with Young Epilepsy recruitment candidates and ensures that the voice of children and young people with epilepsy are heard in.

I was gifted with epilepsy when I was eight years old and undergoing Leukaemia treatment. Ah, what a lucky start to life! I distinctly remember having a seizure when I was a lead in my primary school play. Everything was going brilliantly. Out of the blue, BAM! Before I knew it, I blacked out and fainted in front of everyone on stage. Not exactly a convenient location. From then on, it’s been a series of seizures throughout my life and so many challenges. I wasn’t allowed to have baths or stay out late at night. I’ve had many memory issues. These are challenges many people with epilepsy face.

With the proper medication, lifestyle, and support networks, I’m at a stage where my epilepsy is controlled (though there have been resurgences), and I don’t feel embarrassed about it. Most importantly, it makes me want to talk more about epilepsy and show others the reality by creating content so people understand what epilepsy is and if there will ever be a cure. I really hope there will be.

I am a qualified paralegal with a over three years of progressive experience in criminal litigation support. I am studying Law at SOAS University of London on a fully-funded scholarship.

My childhood dream was to become a lawyer, it remains my ultimate professional goal. Suffice to say, I am on track to achieve that goal thanks to my family and wider community.

All considered, my diagnosis has not slowed me down one step. It continues to inspire me and I hope that my story one day inspires someone else.

Keshon has recently supported our #OnTopOfEpilepsy campaign by writing a letter to local healthcare leaders sharing his experiences and asking for improved mental health support for children and young people with epilepsy.

Hi, my name is Daisy and I'm a culinary arts student in London. I was diagnosed with epilepsy at around about eight years old when my teacher noticed I daydreamed a lot. I currently haven't found the right medication for me and have absent seizures daily. When I joined Young Epilepsy, I was very lost and struggled to understand my condition. It has been a very influential experience and has been a way of educating myself whilst getting to meet and hopefully help others like me. Becoming a Young Rep was one of the best things I ever did. Its had nothing but positive effects on my life and I can't wait to see what’s next.

Daisy has been involved in lots of projects including co-presenting some cook along ketogenic diet recipes which you can watch on The Channel here: https://thechannel.org.uk/treatment/keto-kitchen

My name is Lauren Williams. I am studying maths at college to hopefully progress on to a further supporting, teaching, and learning course. I am now 25 years old. I hope to keep inspiring other young people like me. I love volunteering with local libraries, and I am also part of a drama workshop which I love. I have been lucky enough to be involved in staff interviews with Young Epilepsy. It is good that Young Reps get the opportunity to have their voices heard.

Hi! My name is Beth. I’m 22 years old, I was diagnosed with primary generalised epilepsy with photo sensitivity when I was six. I have tonic clonic seizures and have tried seven different AEDs. I am in my first year of university studying Speech and Language Therapy. Epilepsy has always played a huge impact on my life and my mental health especially after each seizure and for the months to follow. However, it can be such a positive thing and not something I would let define me. During the pandemic I set up an Instagram page called “The reality of Epilepsy” to raise awareness of epilepsy and the stigmas attached. Since then, I have spoken to so many wonderful people and have learnt so much too! I am so excited to be part of this organisation and be helping young people with epilepsy.

I’m Rachael, 24 years old and working full time for a marketing agency on the Nestlé accounts and loving it! One of my highlights with Young Epilepsy was back May 2020 during National Epilepsy Week I took over their Instagram for a day to share my experiences and advice, and did a Q & A with their followers. I also did a 1-2-1 Zoom interview with Jamie Lang from Made in Chelsea asking him all about his Candy Kittens business, how he was surviving lockdown including his exercise, favourite local coffee shops and podcasts he listens to.

I’m lucky to be on medication that controls my epilepsy being over 5 years seizure free, but something that still crosses my mind every single day is “what if I have a seizure here?”. For me the biggest struggle was my mental health but over time I’ve built an amazing support network around me and learnt how to take care of all sides to myself. Our mental health is equally as important as our physical, and it’s so important to raise awareness about it because epilepsy is #MoreThanSeizures.

Hi I'm Olivia, most people call me Livvy, I am 23 years old and have been a Young Rep since November 2019. I was diagnosed with epilepsy when I was 10 and trust me it's been one hell of a roller-coaster, unfortunately for me I've developed other seizures age 17 (don't let this scare you, it's different for everyone).

Having epilepsy has affected my independence, I went from being a verry bubbly independent child, doing things like walking to the shop to get myself some sweeties like many "normal" child would do, to then being a child where I wasn't allowed to be left alone, and still to this day I don't go out alone. When I was in primary school and year 7 I went from being in top & middle sets in school lessons, to being bottom set due to my seizures affecting my memory over time.

Livvy has been involved in lots of exciting projects including a podcast with her fellow Young Reps, Dr Hilary and Hum Flemming which sees them share their experiences with epilepsy, and together they dive into several topics. To watch the podcast, use this link: https://thechannel.org.uk/growing/lets-talk-epilepsy-dr-hilary-jones-hum-young-reps