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Alice Stone
My name is Alice Stone and I was diagnosed with epilepsy when I was 17 years old. I had just started college and was doing everything a normal teenager would do. My first seizure happened whilst I was travelling as a passenger in my friend’s car. I think it was scarier for him than it was for me as I was unconscious and so unaware of what was happening.
The next two years were very difficult for me. Mixing different medication, constantly in and out of hospital and all the while still having tonic clonic seizures.
My family and friends have been very supportive throughout, but I think my parents were hit the hardest by my diagnosis. My mum told me recently that she was devastated when I started having seizures as she felt so helpless and she just wanted to protect me.
Whilst I was having seizures I was scared to leave the house. I wasn’t embarrassed by the thought of having a seizure whilst out, I just felt safer at home and knew my family knew what to do if I had a seizure.
Eventually my epilepsy specialist found the medication that was right for me and I have now been seizure free for three years!
My first connection with the National Society for Epilepsy (NSE) was when I saw a poster at my local hospital asking for volunteers. I gave them a ring and the rest is history. I now volunteer part time for the NSE Schools Awareness Programme which is great fun and very rewarding. The kids are great and really interested in epilepsy and they are amazed when I tell them that I have epilepsy. They seem to have this image of a person with epilepsy and apparently I don’t fit it!
If I could give one piece of advice to anyone who has recently been diagnosed with epilepsy it would be to accept the support on offer. You will feel scared and down but having that extra support really makes all the difference. When I was first diagnosed I just wanted to forget it was happening and get on with my life, but eventually I realised that I did need the support of others. It makes a massive difference when there is someone there to listen.
I think the information and support that NSE offers is fantastic. I think the Epilepsy Helpline and Forum area on the website are the most important services for someone who has just been diagnosed with epilepsy, as they provide the opportunity to talk and to realise you are not alone.
Five years on from my first seizure, I’ve been seizure free for 3 years and I am really happy. I’ve got a great job working behind the bar in a theatre and in my free time I really enjoy rum tasting as it is a big passion of mine.
