NonprofitPurple Day (the International Day for Epilepsy Awareness is on Monday 26 March) IAmA epilepsy helpline adviser - ask me anything
Mar 23rd 2018 by EpilepsyAction • 8 Questions • 298 Points
Edit: Thank you everyone for the questions. Our first time doing something like this and we realise we might have posted at a difficult time. I am going to have to go back to the phone lines now but please continue to post questions and me and the team will answer them when we can. It may be next week. Apologies if we can't get back to you today - Grace.
Around 50 million people worldwide are affected by epilepsy. Purple Day, the International Day for Epilepsy Awareness, is on Monday 26 March.
I'm Grace from the Epilepsy Action (www.epilepsy.org.uk) helpline. Please ask me any question you have about epilepsy. Different seizure types, myth busting, first aid, daily living, SUDEP. Please note - I am not a medical professional. I can't diagnose or recommend products.
Find out more about our Purple Day efforts: www.epilepsy.org.uk/purple
If you have any confidential questions about epilepsy, please email us at [email protected] or call free phone in the UK 0808 800 5050
Hi Grace! I'm from twitter & I have epilepsy thanks for doing this, raising awareness is so important!
My seizures are triggered by stress, dehydration & a lack of sleep. A lot of people have seizures for different reasons & the common misconception is that flashing lights (photosensitivity) causes seizures for all epileptics, but that's not true.
What are some other known causes for triggering seizures?
Hi! My colleague Rich (our Social Media Officer who is helping me) out recognises your name. Stress, lack of sleep and missing doses of epilepsy meds are the biggest triggers. Others include drinking lots of alcohol, illness with a high temperature, and for some people monthly periods. We have more info about triggers on our website. Photosensitive epilepsy is something people immediately think of when epilepsy is brought up. It's actually one of the rarest types of epilepsy. Around 3 in every 100 people with epilepsy have photosensitive epilepsy.
Hi! I'm here from /r/Epilepsy. I'm an epileptic with focal, atypical absence, and myoclonic seizures. I was diagnosed in 2005 in the US and have been managing my condition in Denmark since 2010. Thanks for doing this, Grace! It's important to spread awareness about this condition.
Do you have any resources you can share about what to do when someone has a seizure? First aid and aftercare would be helpful to spread awareness.
Also it would be nice if we had some sort of card we can carry around in our wallet with that information.
I have a lot of people who are baffled by what to do when I'm having a seizure. I've had people try and give me water and wet towels, or call an ambulance to get me to a hospital when it's not necessary.
Great to see someone here from /r/epilepsy - we encourage everyone to use this fantastic community.
Never tried it! Being English I am partial to a nice cup of tea, though.
Does cannabis actually help people with epilepsy lead more comfortable lives?
It looks like it could be positive for people with hard to control epilepsy, but lots more research is needed. We're calling on the UK government to support and fund more research into it.