Scarborough teenager: 'More awareness needed about epilepsy'
It's to help break the stigma of seizures and the fear of being filmed
A teenager from Scarborough says there should be more awareness about the different types of epilepsy.
It's to break the stigma of seizures and the fear of being filmed in public places.
14-year-old Aiden Phillips said: "About two years ago I was diagnosed with epilepsy absent seizures, where I could be in the middle of a conversation and I'd blank out and be unresponsive. It would only happen for about a minute but it would affect me quite a lot.
"There was a time when I was at school, it was fourth period and I don't think how but I just completely forgot everything and I ended up walking home. I just left school and when I got home my mum was really confused about everything and I was too.
"We were really worried because I could just be walking home from school and I could just stop in the middle of the road or something. We didn't really know what to do and I always walked home with my friends who know about my condition so they looked out for me. I just have a lot of support from everyone around me to look out for me.
"I mainly feel really tired after having a seizure and not all the time, but sometimes, I can sort of feel when I'm feeling that way because I just feel very tired and grumpy. It's those little signs that can have a deeper meaning to it.
"It's always somewhere in the back of your mind that people who don't udnerstand seizures will judge you or take the better of you, so you don't really know what to do in a situation because you don't know what to do until you're in it.
"Until I got diagnosed the only epilepsy I knew of was the flashing lights, so unless someone else has it they don't understand the different types and I think it would be beneficial for people who do have it, for more people to understand what they're going through and how to give support on that."
Epilepsy Action campaign
The charity has launched its CARE acroynm and free posters to create a more supportive environment for people with epilepsy in public space as it is revealed fears lead people with epilepsy to avoid social interaction.
Its research showed:
• Over 50% of people with epilepsy in the UK have avoided public places due to the fear of having a seizure and experiencing stigma and misunderstanding.
• 47% of people with epilepsy have been accused of being drunk or on drugs after having a seizure in public.
• 8% of people with epilepsy have been robbed, and 7% have been physically assaulted while having a seizure in public. 10% search social to see if videos or comments exist.
• Over 90% of people with epilepsy believe that public spaces do not do enough to help or make people aware of what they should do if someone has a seizure in public.
Today, Epilepsy Action is launching the CARE acronym to teach the key things we need to know and do when it comes to looking after someone having a seizure in public.
C – Comfort
Cushion their head with something soft to protect them from injury
A – Action
Start to time the seizure, and clear the area of anything that might be harmful. You could also check if the person has a medical ID or bracelet with more information on how to help
R – Reassure
After the seizure stops, put the person in the recovery position and reassure them as they come round
E – Emergency
Call 999 if the person:
- has a seizure lasting longer than 5 minutes
- is not regaining consciousness
- goes straight into another seizure
- has trouble breathing after the seizure stops
- has never had a seizure before