EPILEPSY AWARENESS
Thank you for checking out my powerpoint!
Spreading awareness is so important as a lot of people are still unaware of Epilepsy, including people who work in the medical field.
Here you will find information on Epilepsy, seizures, and first aid.
Slides 15-17 at the end have information for content creators and game devs!
Last updated: 17/12/2024
Anyone can develop Epilepsy, at any time.
Epilepsy is usually only diagnosed after a person has had more than one seizure and not all seizures are due to epilepsy.
Over 600,000 people in the UK have Epilepsy. (About 3.4 Million in the USA)
Around 1 in 100 people has Epilepsy and of these people, around 3% have photosensitive epilepsy.
In 65% of epilepsy cases there is no known cause!
70% of cases can have their seizures controlled and even stopped with the right medication.
SUDEP (Sudden unexpected death in epilepsy) is not common but It happens.
Cyber Attacks
Here are cases of when flashing imagery was used to harm people with photosensitivity and almost caused deaths showing the lack of protection put in place for most Epileptic people online till 2023
2008
An attack on an Epilepsy Foundation support message board.
Hackers used javascript code and flashing images to attack users.
2017
A journalist got a reply on Twitter with a strobe gif saying “You deserve a seizure for your posts”
This caused him to have a seizure which almost killed him. He would have died if his wife didn’t find him, he was left incapacitated for several days, lost feeling in his left hand and had trouble speaking for several weeks.
These attacks kept going.
2020
On national Epilepsy awareness month thousands of Twitter followers of the Epilepsy Foundation were targeted. At least 30 different accounts posted videos and gifs of strobe lights to Epilepsy related hashtags and @s and replies to the Epilepsy Foundation.
It’s unknown how many were affected but we do know of a 9 year old called Zach who was.
This caused him and his mother to work with a charity to create #Zachslaw, where they’re trying to urge the government to introduce a new offence to project people with epilepsy from online attacks.
As of 2023, #Zachslaw was approved and it’s now a criminal offence to send or show flashing images electronically to people with Epilepsy in the UK.
Types of Seizures.
Epilepsy is an umbrella term covering many types of seizure and epileptic disorders.
Seizures can be different for each person.
Seizures are divided into groups depending on:
Depending on where they start, seizures are described as being focal onset, generalised onset or unknown onset.
There’s also Non Epileptic and Dissociative seizures which are not caused by abnormal electrical activity in the brain!
Non-epileptic attacks happen when the brain can’t handle particular thoughts, memories, emotions or sensations. They can also sometimes relate to stress or a previous experience of trauma.
Focal Onset:
Focal Onset seizures start in and affect just one part of the brain.
The person is conscious and will usually be aware of what’s happening will remember after.
Sometimes called ‘warnings’ or ‘auras’ because sometimes these seizures develop into another type.
These affect a bigger part of one side of the brain. The person consciousness is affected and they may be confused. They might be able to hear you but not fully understand or respond. The person might also not react as they normally would and could think you’re being aggressive if you yell and react the same back.
Generalised Onset Seizures:
Affects both sides of the brain at once and can happen without warning. They’ll be unconscious and won’t remember what happened.
Unknown Onset Seizures are used to describe a seizure if doctors are not sure where in the brain the seizure starts!
Clonic Seizures
These involve repeated rhythmic jerking movements of one side, one part, or the whole body.
Myoclonic means ‘muscle jerk’ which are not always due to Epilepsy. These are brief and can happen in clusters (often happening shortly after waking). During the seizure, the person is conscious.
These seizures can either be focal or generalise and the person is likely to have other seizures.
These are the seizures everyone usually thinks of when you say Epilepsy. The person goes unconscious and convulses, their body goes stiff and if they’re standing they will usually fall. They might also cry out and possibly bite their tongue or cheek. The person can also soil themselves.
During a Tonic Seizure the person’s muscle become stiff, if they’re standing they often fall (usually backwards). Tonic seizures tend to be very brief and happen without warning.
In an Atonic Seizure (also called a drop attack) the person's muscles suddenly relax, and they become floppy. If they’re standing they’ll usually fall forward. These also tend to be brief and without warning.
Typical Absences
During these seizures, a person becomes blank and unresponsive. They may appear to be ‘daydreaming’
The person may stop what they are doing, look blank and stare, or their eyelids might blink or flutter. They will not respond to their surroundings. If they’re walking they may continue walking but will not be aware of what they’re doing.
Atypical Absences
These are similar to the above but start and end more slowly, as well as lasting a bit longer. They also include a change in muscle tone where the limbs go limp or floppy and some people may fall.
Photosensitive Epilepsy
This is when seizures are triggered by flashing lights or contrasting light and dark patterns.
(Flashing or patterned effects can make people with or without Epilepsy feel disorientated, uncomfortable or unwell. This does not necessarily mean they have photosensitive Epilepsy)
What rate of flashing light can trigger seizures?
Between 3-30 hertz (flashes per second) are the common rates but this varies from person to person. While some are sensitive to frequencies up to 60 hertz, sensitivity under 3 hertz is not common.
Some triggers:
Non-Epileptic Seizures
Seizures that are not due to Epilepsy are sometimes called ‘Non-Epileptic seizures’, they may look similar to epileptic seizures but they are not caused by abnormal electrical activity in the brain. They can be caused by mental stress or a physical condition such as a heart condition, diabetes, psychological pain, or an accident.
The most common type of NES is called functional seizures, sometimes called dissociative seizures.
Functional (dissociative) seizures
Some NES are caused by mental or emotional processes such as when someone is struggling with painful or difficult thought and feelings, this affects them physically and is called functional seizures.
What to do when someone is having a non-epileptic seizure:
How to help
Triggers for seizures can be different for everyone, some commonly reported triggers are:
Specific time of day, Sleep deprivation, illness, lights, alcohol, drugs, stress, menstrual cycle/hormone change, Not eating well, dehydration, and more depending on the person.
We can’t yet predict when a seizure is going to happen, except for the people who can feel a “aura” and those with Epilepsy dogs.
How can I tell if someone is having a seizure and how can I help them while they’re having a seizure?
If you’re wanting to help someone you know, It’s best to just ask them how you can help!
For strangers here is a link of symptoms and in then next slide there will be info on first aid.
First Aid
For Convulsive Seizures:
DO:
DON’T:
Call an ambulance if:
First Aid
For Focal Seizures:
DO:
DON’T:
Call an ambulance if:
First Aid
For Seizures in a wheelchair:
DO:
DON’T:
Call an ambulance if:
Content Creation and the Epilepsy community
What can I do to minimise triggering possible symptoms?
Like above, post warnings where you can e.g Title, description, chat command, and/or a timed chat message. You can use DoestheDogDie.com if you’re unsure If the game has any flashing lights, but sometimes It’s inaccurate or lacking information so be cautious still and try checking other places too.
Check your emotes, alerts, and stream overlays don’t have anything from the list of possible triggers. (The Twitch celebration alerts can be triggering!)
Especially make sure your raid videos are safe. If you’re going to show a video for every raid and It’s incredibly flashy. That’s not good!
Spread awareness to others!!! So many people are not aware of any of these issues, even people who work in the medical profession!
Check out the next slide for some tips on reducing effects if you are unable to remove them from your content and wish to do more than give a warning!
Reminder that this is helpful for everyone, strobe lights/patterns can give anyone headaches or make them feel unwell, not just people with Photosensitive Epilepsy!
What’s the most effective way to warn folks about flashing lights when streaming or in videos?
Warnings! Post warning everywhere you can. Any type of trigger warning/photosensitivity warning is helpful.
If It’s a game you know and you can say specifically when something is about to happen, that’s even better!
Being specific on what’s going to happen is even better than a simple text going “Epilepsy Warning”
A warning saying where to skip and come back are great for video content. Preferably on screen before the moment, you can also use a small sound alert e.g “You can return when you hear (BLANK)”
Recommended ways to reduce flashing on flashing content when you can’t avoid showing them.
If you are making video content, as stated in previous slide, show times and places people can skip this content before it happens.
You can learn more here:
https://www.epilepsy.org.uk/press/photosensitive-epilepsy-and-online-content
For game devs
How can I make my game safe?
The easiest way is to not put any strobe lights or moving patterns in your game (more examples mentioned in Slide 8). If you feel you must have some type of effect then adding a setting to reduce or completely turn these off would be appreciated by many players.
If you must have these, putting a warning at the start of the game is great but if possible adding more detail somewhere on what is flashing and where in the game It’s happening is also great e.g “Level 7 has lightning flashing in the background or fullscreen foreground flashing please check the settings to turn this off”. Some games add a warning at the start and it ends up being safe to play because they decided to add it for legal safety and some games don’t add it at all when they do need it.
Please put this warning outside the game too, It’s not fun buying a game to find out you can’t play it and you have to refund it or worse, you can’t.
Slide 8 also has information on what frequency of flashing is the most triggering, if you must have flashing then you can try keep the frequency low or check out the previous slide.
If possible, consult people with the condition or professionals
Please check out this amazing document by Arevya for more information on making games accessible for all types of disabilities and people! Game Accessibility 101
People with photosensitive epilepsy are not the only people who will benefit from removing strobes from your game. So many people get headaches/migraines and feel unwell from strobing lights! Your entire player base could benefit from having no strobes or just settings to adjust things.
They are not necessary to make your game enjoyable, or for making lightning effects. You can still have an enjoyable came without these and there are many ways to play around with lightning effects in a safe way.
If you feel like these are a must have, even just a setting to turn lightning flashes off or any type of strobe (e.g emergency vehicles become static lights) would be amazing and appreciated by many people.
Rainbow Six Siege added flashbang customisation and people who are not epileptic appreciated it as the white flashbang affected them too.
Webbed already had a setting to remove the background that has flashing but still had foreground flashes for lightning, when I brought it up that they need a warning, they simply just removed the foreground flash since it’s not necessary for the game.
Sources of information:
https://epilepsysociety.org.uk/
https://www.cedars-sinai.org/home.html
https://www.nhs.uk/conditions/epilepsy/
https://www.epilepsy.org.uk/info/seizures
https://www.epilepsy.org.uk/press/photosensitive-epilepsy-and-online-content
Personal experience as a person with Photosensitive Epilepsy. As well as family and friends with Epilepsy and general photosensitivity.