Suffolk woman calls for better understanding of epilepsy
It's after a survey found more than half of people have been accused of being drunk or on drugs following a seizure
Last updated 24th May 2023
A woman in the East is calling for more awareness of epilepsy.
It's after a report found over 50% of people with the condition in the UK have avoided public places due to the fear of having a seizure and experiencing stigma and misunderstanding.
That's according to Epilepsy Action, which also found 47% of people have been accused of being drunk or on drugs after having a seizure in public.
49-year-old Brenda from Suffolk, was diagnosed at 13: "Those who have full blown seizures will fall to the ground and shake violently - with those, most people know to put them in the recovery position, stay with them and call an ambulance, but with the absent seizures I get, you can look like you're high on drugs or have been drinking, so it's really difficult.
"I used to wear a bracelet which told people I've got epilepsy, but unless I was wearing a short sleeved top, people couldn't see the bracelet."
She also says members of the public aren't always helpful when she's having a seizure: "I've seen people when I'm about to go into seizure just walk past - even police have walked past.
"Once, I had someone ask if I was alright, and when I said I wasn't and that I was going into seizure, they told me 'oh, well I'm in a rush, I can't stay' and walked off.
"I think it's because people are scared and they don't know what to do, so they'd rather ignore it and get on with their every day life."
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