Amaya, 16, from Southport, shares how being diagnosed with Juvenile Myoclonic Epilepsy (JME) changed her life, her confidence and her plans for the future.
Epilepsy changed the future I'd imagined for myself, but it hasn't changed who I am.
The first sign that something wasn't right seemed small at the time.
In September 2023, when I was in Year 9, I started experiencing random jerks. My hands would suddenly move without warning and I would drop things or accidentally throw them across the room. We thought it was anxiety or stress, so I tried not to worry about it.
But the jerks didn't stop.
As time went on, I became increasingly tired, especially in the mornings. Looking back now, I realise these were early signs of epilepsy, but at the time I had no idea what was happening.
Everything changed during Christmas of Year 11.
While on holiday in the Lake District, I had my first tonic-clonic seizure. It was frightening for both me and my family, and it started a series of hospital appointments and tests to find out what was causing my symptoms.
After an electroencephalogram (EEG) at Alder Hey Children's Hospital, I was diagnosed with Juvenile Myoclonic Epilepsy (JME). The test also showed that I was photosensitive.
Getting a diagnosis brought mixed emotions.
Part of me felt relieved because I finally had an explanation for everything I'd been experiencing. At the same time, I felt scared. I was still trying to process what epilepsy meant while also preparing for my GCSEs.
It felt like my world had suddenly changed.
Although my family were incredibly supportive, I often felt alone. One of the hardest parts was dealing with the uncertainty and wondering what the diagnosis would mean for my future.
Losing the future I'd imagined
For as long as I can remember, I wanted to work in musical theatre.
I loved performing and spent years working towards that goal through drama, dance and singing. Theatre wasn't just something I enjoyed, it was a huge part of my identity.
Despite my diagnosis, I continued to work hard and successfully auditioned for prestigious performing arts schools, including LIPA and RARE Studios.
Being offered those places should have been one of the happiest moments of my life.
Instead, I found myself questioning whether I could safely manage the demands of professional theatre training while living with epilepsy.
Making the decision not to pursue that path was heartbreaking.
It felt like I was losing the future I had always pictured for myself. While it's something I'm still learning to accept, I've realised that epilepsy may have changed my plans, but it doesn't mean I can't continue doing the things I love.
I still perform in amateur productions whenever I can and theatre remains a very important part of who I am.
Finding support
One thing that has helped me is having people around me who understand.
My auntie also has JME, so she has been able to offer advice and reassurance when I've needed it most.
My boyfriend Charlie has also been an amazing source of support. He took the time to learn about epilepsy, supported me through seizures and reminded me that I was still me, even when it felt like everything in my life was changing.
Their support has made a huge difference during some of the most difficult moments.
Looking ahead
Today, I'm studying BTEC Social Sciences.
Although it's a different path from the one I originally planned, I'm excited to see where it leads. Living with epilepsy has taught me resilience, patience and the importance of asking for help when I need it.
It's also made me passionate about raising awareness.
There are still so many misconceptions about epilepsy. Many people don't realise how much it can affect everyday life, from education and friendships to confidence, mental health and future ambitions.
That's one of the reasons I wanted to share my story.
If another young person recognises their symptoms, feels less alone or gains a better understanding of their condition because of my experience, then sharing it will have been worthwhile.
I'm also planning fundraising challenges for Young Epilepsy and hope to continue raising awareness about the realities of living with epilepsy. One day, I'd love to run the London Marathon for the charity.
Epilepsy changed the future I'd imagined, but it hasn't stopped me from moving forward.
My message to other young people with epilepsy is simple: your diagnosis is only one part of your story. It doesn't have to define who you are or what you can achieve.
