Image of our Young Reps

Young Reps

Young Epilepsy is committed to creating a society where children and young people with epilepsy thrive and fulfil their potential. To achieve this, Young Epilepsy will engage with children and young people to ensure that their experiences and views inform and guide the work that we do.

Article 12 of the UN Convention on the Rights of the Child (UNCRC) establishes the right of children and young people to express their views and be involved in decisions that affect them, both as individuals and as a group.

Young Epilepsy is committed to creating a society where children and young people with epilepsy thrive and fulfil their potential. To achieve this, Young Epilepsy will engage with children and young people to ensure that their experiences and views inform and guide the work that we do.

Our Young Reps are leading on this. The group is compiled of young people aged 16-25 who represent children and young people living with epilepsy throughout the UK. The group is fundamental in ensuring that young people are at the centre of everything we do; the Young Reps contribute to our strategy and are involved at all levels of the charity to ensure that decisions and overall direction of services provided meet the needs of children and young people with epilepsy.

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Renell

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Renell

I suffer from tonic clonic seizures due to a brain tumour. Dealing with epilepsy has made it something very close to my heart. I play football and there is a lot of stigma around sports and epilepsy. I want to break down the barrier between them and show people they are not alone in what they are facing. Young people should feel free to speak out about it and not let epilepsy get in the way of their dreams. Let's stand up and face epilepsy together!

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Alice

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Alice

I’m Alice and I’m 22 years old. I was diagnosed with epilepsy when I was 19. I have tonic-clonic and focal seizures. Finding out I had epilepsy in adulthood took a lot of adjusting, particularly as I was not able to drive anymore and had to become more aware of things like going places on my own. It was difficult to get used to what was going on, and also took a toll on my mental health. However, I’ve been careful not to let it define me and I’ve now finished my second year at University. I’m really interested in raising awareness of epilepsy as I've noticed many misconceptions and myths surrounding epilepsy. I also wish to emphasise how a diagnosis can impact your life and mental health but shouldn't limit you. 

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Sacha

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Sacha

My name is Sacha. I am 21 and I am current studying at University. I was diagnosed with epilepsy at 15 and have tonic clonic, myoclonic jumps and absence seizures. I have never been completely controlled, however I have had long periods of time without tonic clonic seizures. I am still trying different drugs and dosages. I am really passionate about spreading awareness of epilepsy and making sure there is the best possible support for young people.

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Rachael,

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Rachael,

My name is Rachael, I’m 21 years old and was diagnosed with epilepsy at 17. Having epilepsy can be really difficult because it forces you to make impossible choices - it’s you’re health vs everything else. I really struggled with my diagnosis because at aged 17 people are learning to drive, going out drinking and looking at universities and I couldn’t do this. By finding the right medication and managing my lifestyle carefully, I've been seizure free long enough to learn how to drive and now have a great job for field marketing company. Epilepsy has massive stigmas, one of them being that epilepsy is only seizures and nothing else is effected. I hope that working with Young Epilepsy we can educate people and help support others with epilepsy!

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Annie

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Annie

Hi, my name is Annie. I suffer from absences and complex partial seizures and had brain surgery in 2019 to try and limit the episodes I have and to potentially stop them for good. Using social media and my blog, I do my best to raise awareness about epilepsy and want to put my all into helping Young Epilepsy do this too. I work a full time office job near Birmingham as an Administrator helping day to day across Digital and Marketing meaning every day holds something new!

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Jasmine

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Jasmine

Hey! My name is Jasmine, I am 22 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 Graphic Design, which has always been an interest of mine. I like to use my skills I have obtained from graphic design to educate society on epilepsy and how it effects people’s lives. Epilepsy opened my eyes to how precious life is and to appreciate the little things, such as walks with my dogs or time spent with family and friends.

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Lauren

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Lauren

Hi! My name is Lauren. I'm 23 years old. I believe that epilepsy can be a positive thing. I have had epilepsy since I was 4 years old. I also have cerebral palsy. Everyone should be aware that you can live with anything and continue to stay positive and happy. I love being creative. I've had a strong interest in drama, creative writing and acting from a young age and I'm in an adult drama group now. I've never stopped doing drama despite my physical disability and my epilepsy. I'm just trying to be positive and achieve things at my own pace. I hope I can continue to inspire other young people by telling my story. I also love reading. I've achieved things throughout my educational journey too.. including attending college and having qualifications in many courses. College is a struggle sometimes, but I'm surrounded by good tutors and wonderful extra support. I believe that everyone should still be able to live a normal life despite changes in their own health journeys.

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Olivia

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Olivia

My names Olivia I am 20 years old I have 3 types of seizures. I love to dance and being active, along side my epilepsy I have autism and a few other disabilities. I was diagnosed with epilepsy just after my 11th birthday. Having epilepsy has had a huge impact on my daily life since being diagnosed. I’ve not been able to be as independent as I used to in my childhood, but despite the odds I have never let epilepsy control me and I will always carry on with my day to day life. It has never held  me back from any of my passions. Since being diagnosed it has made me open my eyes to haw fragile life is and how short it can be, and I will always treasure every moment.

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Steven

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Steven

Hi, my name is Steven and I’m 21. I have tonic clonic seizures and absences which are mostly controlled by meds. However, I’ve had my fair share of trips to A&E and spent a few nights in hospital courtesy of the NHS! I try not to let epilepsy define me and try to live life to the full. Some days are more successful than others. It’s not a club I would have voluntarily signed up to, but I’m a fully committed member to raising awareness and long term hope to see a cure.

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Anoushka

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Anoushka

Hi, my name is Anoushka and I am 17 years old. I am currently in my last year of school and hope to study medicine in 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. My first seizure was when I was 6 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 am about to learn driving, which I’m very excited about and hope to show to others that having a condition doesn’t hinder you from achieving your goals. 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!

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Daisy

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Daisy

Hi, my name is Daisy and I'm a 17 year old catering student from Cheshire. I was first diagnosed with absent seizures at around 7 years old which, at the time seemed absolutely terrifying and completely life changing. I found out pretty quickly that it actually wasn’t, it was just another part of who I was/am. I received no medications or treatments till around 16 as they weren't having an impact on my life. In the past year or so, I started my medication journey as my epilepsy symptoms started to intensify. Then, I had the chance to become a part of an amazing organisation which would help me understand my condition  better whilst getting the opportunity to help others do that also.

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Joe

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Joe

I'm Joe, and I have been a devout epileptic since I started having tonic-clonic seizures in my sleep at the age of 11. Thankfully, I got put on lamotrigine and found a comfy dose straight away, and was relatively seizure free for about nine years or so. In that time, I made the bonkers decision to run the London Marathon at the age of 18, but it was an awesome day and I raised over £4,000 for Young Epilepsy in the process, so. I'm now a third-year English student at the University of Nottingham, doing my utmost best to show that being epileptic at university is an entirely possible experience. However, as we all know, 2020 has been absolutely awful, and in line with that my epilepsy decided to make a nasty resurgence this year. I am now part of both the absence seizure and the awake tonic-clonic seizure club, but we've played with my dosage a bit and we seem to be back on the right path now.

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Ellie

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Ellie

Hi, I’m Ellie and I was diagnosed with epilepsy on my 18th birthday! As you can imagine it changed my life a bit, but I didn’t let it stop me for very long. I have attended drama school since I was 16 and am continuing to try and make the acting industry a more accessible and welcoming place for people with conditions such as epilepsy. I believe that no young person should have to pass up on their dream career because of a lack of knowledge outside of this community, which is why I am excited to be working with Young Epilepsy!