The Blog

More Than a Label: Championing a Cause Not Becoming the Cause

Christmas is without a doubt my favourite time of year. I love the Christmas lights and the spectacular window displays. Let's face it; it is the one time a year when we have an excuse to be a kid again!

Christmas is without a doubt my favourite time of year. I love the Christmas lights and the spectacular window displays. Let's face it; it is the one time a year when we have an excuse to be a kid again!

Christmas is also a reminder though, of something that happened to me 7 years ago.

I was 24, working in one of the world's largest luxury department stores. It was an exciting time; I was young, in the best city in the world, with great family and friends around me. It was the last few days before Christmas so I was winding down at work. I was sitting at my desk typing when, in what seemed the blink of an eye, I found myself on the floor surrounded by people in my office asking if I was alright. I'd been unconscious for a couple of minutes. I was rushed to hospital in an ambulance and after 4 hours in A&E, I was sent home and told that I would need to have neurological tests.

It was a really difficult Christmas. I just couldn't get what had happened out of my head. Had I experienced a fainting fit or a seizure, and was it symptomatic of something more sinister, a brain tumour or a blood clot?

Over time though, I was able to move on. I was soon to celebrate Valentine's Day with my new boyfriend. When I got to work on Valentine's Day I wasn't feeling 100%, and I had this really weird sense of déjà vu. My friend and I went to the canteen, I took a bite of my chocolate bar, and then it had happened all over again. I was on the floor, surrounded by people, and then taken to hospital in an ambulance. While I spent Valentine's Evening in hospital, my new boyfriend and my parents went for a romantic meal! The mystery of the missing chocolate I had been eating was also solved when 5 hours later I discovered chocolate in my hair.

The next day I was diagnosed with epilepsy, and prescribed medication to stop seizures.

I'm not going to lie, at the time I was devastated. I had no understanding of what epilepsy was. I could go on for days about the internal conflict I went through the first year after being diagnosed, but suffice to say it was hard, but I made it through. What I did figure out during that time was that I was more than my condition. I started to make a distinction between being 'epileptic' and having epilepsy.

I became curious about epilepsy, and what I found out shocked me. I was definitely not alone, I was just one of 65 million people worldwide with epilepsy. People actually die from epilepsy. Around 50,000 a year in the US, which is more than breast or prostrate cancer. People had traditionally been stigmatised by epilepsy. As late as the 1970s people with epilepsy in the UK weren't legally allowed to marry!

Armed with this information I decided I needed to do something to help champion the cause of epilepsy, as with awareness would come funding, for better medicines, and finding a cure.

In November last year I officially registered my charity - Something on the Brain: It is a charity aimed at changing perceptions and misunderstandings around epilepsy, and educating people what to do in the event of a seizure. It is targeted at the whole community. As someone with epilepsy I obviously feel it is important that I understand the condition, but even more so, in many ways, that the people around me have an understanding. With understanding comes openness, and with openness, acceptance.

The journey is just beginning for the charity, and for me. Starting this charity has meant being more open and honest about my personal experience with epilepsy. This hasn't been easy. I was worried at times that I would be judged for having epilepsy, and that people would look at me differently. But I truly believed that if I wasn't willing to take a risk and step forward, how could I expect anyone else to. I had to be brave, bold, and give another voice to epilepsy.

The last 7 years have been a roller-coaster, both because and despite of my epilepsy. Whilst my epilepsy is likely to stay with me for some time to come, I am now not afraid of what it is and what it represents. One thing has become clear to me; I am more than the label of 'epilepsy', and I always will be. Today I am a 2nd year MBA student, charity founder, daughter, friend, and Women of the Future Award Winner.

Tomorrow and in the future, I will be many different things.