Why I donate

An ambassador for The Voice for Epilepsy, Jade-Kelsie Wolfenden inspires other sufferers to live without limits and raises awareness of epilepsy

I had my first serious seizure on my 21st birthday when I was out in town. I lost consciousness and started convulsing but people thought I was just very drunk and some people even ignored it and stepped over me.

I didn’t take the diagnosis very well and just carried on with my normal life but because it takes a long time for medication to get it under control (up to two years) I kept having seizures. It was absolutely awful and I had two bad ones where my heart stopped and I had to be defibrillated. At one point I was in ICU with tubes down my throat.

The diagnosis itself is a lot to take in. My driving license was taken off me and I was told I couldn’t be alone so, after five years of being independent, I had to move in with my mum. I was working at a gym and as a personal trainer, as well as being a body builder, but I was told I couldn’t teach classes and banned from personal training. Suddenly my hours were cut from 40 a week to eight. It felt like I’d been stripped of all my independence.

Epilepsy can also be embarrassing, as you have no control over your body, including bowel movements sometimes. You don’t want people to see you like that but you have to tell yourself it’s not your fault. I actually have hearing loss because I’ve banged my head so many times while having a seizure.

When you get diagnosed with epilepsy you just get told what you can’t do. Voice for Epilepsy helps people to understand the diagnosis, learn to live with it and not feel alone.

I would like epilepsy to be as well understood and supported as cancer. There needs to be more research into treatment too. There are lots of side effects from the medication and some days it’s hard for me to string a sentence together, I can get tremors in my hands or feel very tired.

It’s important to educate people so that they understand what epilepsy looks like and how to deal with it. One time I was out with my partner and people thought he’d hit me because I dropped to the floor in front of him. People don’t realise but there are over 40 different types of seizure, ranging from convulsive ones to absence seizures, where it looks like you’re daydreaming or ignoring someone. I actually ignored my seizures for a while, often assuming that I’d fainted.

If you think someone is having a seizure you need to time it and call the ambulance if it lasts more than five minutes. You should make sure the area around them is clear and if possible get something soft under their head but don’t touch them. When they come round they may be disorientated. I often don’t know who my partner is, my name or where I am. I once hit a paramedic and tried to run away. After I had a bad seizure at the gym I set up a YouTube channel to talk about having epilepsy and how it effects training, and I’m now proud to be an ambassador for The Voice for Epilepsy. After I came round from a seizure once a paramedic said to me: “I’m so proud that you’re able to live your life because my sister won’t leave the house because of epilepsy,” and that’s always stuck with me. I am a different person

Did you know? to who I was before I was diagnosed, but

More than half a million I’m doing really well. I people in the UK have epilepsy can drive and I compete and it can affect anyone, at any in bodybuilding as well time of life. Find out more here: as owning my own gym – thevoiceforepilepsy.co.uk I’m even working towards competing in the Olympia, the biggest body building competition in the world! I’m also looking forward to doing more fund- and awareness-raising on behalf of The Voice for Epilepsy.