Jack is a young adult living with global developmental delay. This is his story.
John attends the residential St Piers College at Young Epilepsy. This is his story.
Amanda was diagnosed with epilepsy age 9. In this video she discusses how the condition has affected her life.
Find out what life is like when you have a condition such as Epilepsy. Follow Sian and learn how she copes with epilepsy on a day to day basis.
What is epilepsy and how does it affect young people? Watch to find out how Young Epilepsy helps patients.
Learn about one of the leading charities for young people with epilepsy and how Young Epilepsy work to educate and improve the lives of its students.
Watch this video to find out what kind of research Young Epilepsy does and how this helps young epilepsy sufferers.
I just went down into the woods as young kids do. I was with my friend Richard. We started playing on this tree that had come down during the night and we were just playing on it. This little boy came along and was shouting at us to get off the tree. We didn’t want to so we started throwing stones, as children do. He started throwing stones back. Then I bent down to tie my shoelace up, bent down and that’s when the house brick hit me in the head.
I tried to hide it from my Mum and Dad at the time because I just didn’t know what was happening myself. I was only 9. Eventually my Mum and Dad caught me having one. That’s when my Mum and Dad started taking me to hospital. A good few weeks later then they diagnosed me with epilepsy. My Mum was devastated. I would have a fit and the whole way through them I would just keep saying “Mum, mum, mum”, until she got to me.
I started having them in school, but I didn’t even know what was happening to me. Because I fell off my chair, the teachers thought I was just messing and would send me out of the classroom. I was standing outside the classroom, opposite my sisters classroom. Her friend came out to use the toilet and all of a sudden I’m down. She just laughed it off and carried on walking and leaves me there. They use to call me Eppie. Hiya Eppie. I use to hate that. I never ever use to like saying the word epilepsy. I think the more people that know, the better so that they can help you if anything does happen.
I love going down to see my doctors because they are just like me so down to earth. I find that they’ve helped me a lot. They put me on the medication that I’m taking now and my fits stopped. I was so relieved to go a night without having fits. I use to have one every night before I went asleep and every morning before I woke up and all through the night and it was an absolute nightmare.
You have to try all new medication. There could be a medication out there that’s going to fix your problems.
I couldn’t live like that because I had a little young 4-year-old daughter to look after. I couldn’t look after her and myself at the same time while having so many fits. She would just stand back and just look at me and think "well what’s going on?" She didn’t know.
She does girl guides so if there’s ever a place she needs to go, my dad is always there. He says “It doesn’t bother me.” but I always say, “Dad, it bothers me.” I always think if I could drive, I could take her. My Mum took me back and forth from the hospital for years, many years so they’ve both done their fair share really.
I’m glad I wasn’t born with it because then my daughter would have it. I just wouldn’t want her to go through what I went through.
I can remember going down the recruitment office and coming out of there it was heart breaking to know that I couldn’t join the army but I thought you could at least let me have a chance I wanted…anything because I wanted to be a mechanic in the army. I just slide down the wall and just cried.
I love doing my garden. I adore my garden. That’s where I work. I work at home. I just do crafts at home. I just keep myself occupied. When my daughter was younger I made her a hot air balloon. God I’m in the middle of doing a Christmas tree. I’ve made all my family Christmas wreaths. I don’t do junky stuff, my stuff I make is good.
Epilepsy, asthma, whatever you’ve got, you just gotta live day by day I’m sorry. We’ve been on holiday; I’ve taken her to Florida, to concerts. It’s my dream one day to go to New York, that’s one of my biggest things. If you dream it, achieve it. You’ve got to learn to live with it. Learn to live with epilepsy. If you have epilepsy, it’s not the be all and end all. I’m happy, my daughter is happy. That’s the main thing.
Published September 2013comments powered by Disqus