Ryan was diagnosed with epilepsy when he was a young child. Here he shares his experiences of living with epilepsy, how our youth group helped him and why he decided to volunteer for Epilepsy Scotland.
How did you feel when you first found out you had epilepsy?
I was really young at the time, so I don’t really know or remember. I was in the hospital a lot because I was having seizures, it was like my second home.
I didn’t really know what was going on, but I was fed up. Also, I found it hard to concentrate when I was at school, and I still find myself being easily distracted.
What type of seizures do you have? How does it affect you?
I have tonic-clonic seizures. My arms and legs jerk, I lose consciousness, my breathing is noisy, and my lips go blue / purple colour.
Most of my seizures are during the night (nocturnal seizures). Sometimes when I have a seizure, I end up falling out of bed and onto the floor.
The next day I usually feel tired, have a sore head, and dizzy. My Mum and Dad tell me I’ve had a seizure and that’s when I know the reason for feeling like that.
I also have focal impaired-aware seizures. I stare at something, or I will say something random or out of context. These last from a few seconds up to one minute.
I take daily medication morning and night, I have a VNS (Vagal Nerve Stimulator) and Emergency Medication Midazolam.
What challenges have you faced since being diagnosed with epilepsy? Can you give an example?
School was a challenge because I found it hard to concentrate and I was easily distracted.
If I had a seizure the night before I would go into school a bit later so that I could have time to recover. Some staff understood and knew what to do, some teachers didn’t though.
I had a few friends at school but since I left, I lost contact with them. I am at college now and find that with the theory work, I take longer than others which can be difficult.
Even with these challenges I have:
- Achieved being a finalist in the National Youth Work Awards 2022
- I received Best Customer Service Award at college
- Studying Professional Cookery Level 1
- I am working within the catering department at Prestonfield House through college.
How has being part of the Youth Group helped you overcome these challenges?
I have gained a lot of confidence and now have the ability to talk to people a lot more about my epilepsy.
I have had the opportunity to meet new friends and try out different activities with the groups.
Also, I have been on residential trips which have given me the confidence in taking part in activities that I never thought I could do before.
Since I started attending the youth group, I loved every minute of it. My experience of being a member motivated me to volunteer.
The chance to volunteer with the Purple Panda group has given me the opportunity to meet the younger kids to make a difference.
What differences have you noticed about yourself since being part of the Youth Group?
My confidence has changed a lot and I have become a lot more independent than before. The group has helped me develop as my own person.
I have been able to talk to other people a lot more – peers, adults, and children. I feel more able to talk about epilepsy and my own experiences.
Since volunteering I have developed how I interact and talk with young children.
I have increased my listening skills to allow young people to share their experiences. I have taken the lead in running the games within the Purple Panda youth group.
Why did you decide to become a volunteer with the Purple Pandas Group?
I decided to become a volunteer with the Purple Panda Group because I’ve been part of Epilepsy Scotland’s Youth Group for a long time and enjoyed taking part in all activities and I would like to help give the younger children the same opportunity as I have had.
What has been the best part of volunteering with Epilepsy Scotland?
EVERYTHING! So many things have been the best but if I had to choose one… it would be meeting face to face with the Purple Pandas for the first time.
I really enjoyed helping to start the Purple Panda Group to get it up and running.
Meeting the younger members and welcoming them; hopefully, give them the same confidence that I gained from being part of Epilepsy Scotland’s youth group.
What do you think you’ve gained from volunteering?
From volunteering, I’ve gained confidence, the ability to talk about my epilepsy and how it affects me as a person
Being able to listen to stories from the younger kids.
What has been your proudest volunteering moment with Epilepsy Scotland?
The Purple Panda group shared their thoughts about me as a volunteer which was really positive.
They nominated me for the National Youth Work Awards 2022. I was selected as a finalist!
When our group met face to face for the first time, an eight-year-old boy was dropped off. He was a bit nervous that his mum wasn’t staying but he was also excited.
I chatted with him and showed him what to do as he had never been bowling before. He said he loved it and really enjoyed his time. He was talking and interacting with the others which was great to see.
What would you say to someone who is looking to be a volunteer for Epilepsy Scotland?
Come along, have fun and meet lots of friendly people.
What would you say to someone who has been recently diagnosed with epilepsy?
You will be okay. Get support from your family and friends.
Being part of the youth group has meant that I don’t worry about my epilepsy so much.