Emma has lived with epilepsy since infancy, facing discrimination, isolation and misunderstanding. Now seizure-free for seven years, and leading a busy life of NHS work, solo travel and charity activities, she’s determined to be “the advocate I never had” - helping others navigate the challenges she once faced alone.
A diagnosis that changed everything
Emma says that, for many years, she was the victim of discrimination and ignorance - and now wants to be “the advocate I never had”.
Her journey with epilepsy began in infancy.
I had my first febrile convulsion at eight months old - I went blue and floppy in a high chair.
Throughout childhood, she experienced infrequent petit mal seizures, often triggered by strobe lighting.
I couldn’t go to the cinema for 13 years - I’d just end up sick through the whole thing.
Her first tonic-clonic seizure came at 18, during a family holiday in Australia.
I was building sandcastles with my cousin when everything went black. I told my dad I was walking back to the apartment - but I collapsed on the way. I woke up in the back of an ambulance.
The impact was difficult to process - and not just for Emma.
From the first seizure, I had my Mum and Dad lifting me in and out of bed and out of a bath. And my younger brothers were seeing me in hospital with my face bruised from falling off benches and stuff like that, and seeing my tongue bleeding from biting through it.
Australia was also where Emma was prescribed sodium valproate.
It was one of the hardest phases - suddenly needing medication to make my body function. Back in the UK, they changed my drugs again. I’ve probably tried a dozen over the years.
Discrimination and a change of path
Emma had hoped to work in childcare, but her college experience was marred by scepticism.
They questioned whether I could be left with children, even when I was 18 months seizure-free. I had medical letters saying I could continue - but they were still discriminatory.
She did finish her course, supported by a solid group of friends and college counselling. But the experience led her to change careers.
I now work in the NHS as an administrator for a children’s community nursing team.
Discrimination didn’t end with college. Emma describes an incident in a high street store where she had a seizure and her belongings were lost.
I was unconscious - my phone, purse and keys were left behind. It took 48 hours to get them back. They gave me a gift card as an apology - but one member of staff treated me like I was trying to claim free goods.
Not everyone reacted poorly.
Another time, I collapsed in a café. The staff sent me a card and a voucher for the meal I never got to finish. They even wrote to me personally. It was humbling - kindness doesn’t cost anything.
Isolation and the unseen aftermath
Most of Emma’s seizures have happened in public.
It’s daunting - you feel like you’re drawing attention, but you can’t help it.
People think epilepsy is just seizures - but it’s so much more. The aftermath is horrendous. You wake up with an oxygen mask, trying to piece together how you got there. It feels like life pauses, rewinds, and then presses play again.
Emma also experienced social anxiety and isolation.
I had one internet forum - that was it. No social media support like there is now. I didn't know anyone personally in the same boat.
From a low point to understanding
At 19, Emma reached a devastating low.
I tried to take my life. I ended up in hospital in a coma. I didn’t work for three years - I barely left the house. I gained four stone and felt no sense of normality.
Her message to young people now is clear:
You don’t need to feel so sad. I spent long enough in isolation. Just reach out - there is support.
Brave steps and solo travel
Emma has been reaching out - for new adventures. In 2018, she travelled solo around Asia and Indonesia for ten weeks.
People said I’d never be able to travel alone - especially after having seizures in Australia. But I watched my younger brothers do it and thought, ‘I’m their big sister - I can do it too.'
Advocacy and friendship
It’s all helped build a desire to help others.
When I was younger, there wasn’t much knowledge or support. Now I do projects where I speak to trainee doctors about the impact of how epilepsy became a norm in my life.
She’s written articles, and had her hand cast in bronze to represent the Epilepsy Society on a display wall at UCL in London.
I just feel like I am really passionate about the journey that I've been on.
Charities that help young people with epilepsy play a vital role, she says.
They’re more than support. I’ve made friends through them. I’m seven years clear of seizures, another friend is five years clear, and another around one year. Each milestone is cherished and important.
