Lucy's Story

One of the faces of our new awareness campaign is Lucy Prevo. Lucy is a 25-year-old tattoo enthusiast and aspiring filmmaker, and she also lives with epilepsy. When we were shooting the campaign, we spoke with Lucy about her journey with epilepsy so far, and why he wanted to take part in such a public-facing campaign….

I was officially diagnosed when I was 13. At first, doctors didn’t really know what it was. I was getting seizures at school, writing gibberish and staring into space, not able to talk to anyone. It took over a year to be correctly diagnosed, and even then, they were diagnosing me with the wrong kind of seizures.
 

I have simple partial and complex partial seizures. With the complex partial you’re aware of what’s happening, but with the simple partial you’re completely out of it. The auras, which are the feelings beforehand, warn me of an impending seizure.  I’ll get a buzzing in my ears, and a hot and cold feeling in the right side of my body. Then I know it’s time to sit down in a secure environment and ride it out, just let the seizure do its thing.

A big trigger for me is being surrounded by chaos. I was at a shop opening on Black Friday once, and that triggered a seizure. Feeling really anxious in stressful situations or environments seems to bring on seizures.

When I was around 18, I took part in making a short movie about epilepsy with people my age or younger - the oldest was 21, the youngest was 14. Everyone took part. I remember a kid handling the boom mike and us all acting. And it was fantastic. That was when I realised I wanted to share my story with others to help people understand epilepsy better.

I’ve learned not to let epilepsy dictate or define my life. I also have three tattoos that mean a lot to me with my epilepsy. There can be a myth about people with epilepsy being able to get tattoos– another misconception I’m happy to correct!

My first tattoo was a big skull with roses on it on my left thigh, representing the side of my brain with epilepsy. Then I have the Egyptian Ankh - the key of life, and the eye of Horus - the symbol of protection and good health. It’s my way of showing that I’ll never let epilepsy control my life.

That being said, one real challenge I have with epilepsy is not being able to drive yet. My Dad is American and I’ve inherited his love for muscle cars so it’s frustrating to not be able to experience driving one yet. But that’s something I don’t have control over yet – what I do have control over is using my experience to help encourage others to learn more about Time, Safe, Stay and seizure first aid. If I fall down, will you stand up?”

Thank you Lucy for being part of this important awareness-raising campaign. Learn how to stand up and respond to a seizure correctly by visiting the seizure first aid section of our website.