Trolls target people with epilepsy in online attack

Online trolls have deliberately attacked people with epilepsy by posting seizure-inducing videos on Twitter. In November last year malicious users hijacked epilepsy Foundation’s Twitter account @EpilepsyFdn and hashtag to post graphics and videos containing flashing lights and strobe effects. It’s not certain how many people have been affected but the Epilepsy Foundation has decided to press criminal charges against the users involved. The organization has identified more than 30 Twitter accounts responsible for posting the videos. In response Twitter took the measure to ban certain animated graphic files from its platform. This was after the social media organization discovered a bug that caused these types of files to autoplay when tweets were sent.
In a statement Twitter said we want everyone to have a safe experience on Twitter. These graphics were fun but they don’t respect autoplay settings so we are removing the ability to add them to Tweets. This is for the safety of people with sensitivity to motion and flashing imagery including those with Epilepsy.
Photosensitive epilepsy is said to affect around 3% of people with epilepsy. In the UK around 20,000 people are said to be vulnerable to flashing lights or strobe effects such as those in cinemas or nightclubs.
Source Epilepsy Action

Disney Warns of Seizure Risk

Disney has advised that the latest Star Wars film could pose a seizure risk in people with Photosensitive Epilepsy. The Rise Of Skywalker was released in the UK on December 19th 2019 and fans turned up in droves to see it. Fans of the Sci-Fi will know the Star Wars movies consistently feature epic battle scenes, with lasers and lightsabers lighting up the big screen. And it’s possible that the flashing lights and strobe effects during the film could cause seizures for people with Photosensitive epilepsy. Whilst the film has moved from the big screen there is still the chance that it could have the same effects when watching the film on DVD or via a streaming service or television.
A statement from American charity Epilepsy Foundation says Walt Disney Studios and the Epilepsy Foundation are working together to advise Photosensitive viewers to use caution when watching Star Wars The Rise of Skywalker. The film contains several sequences with imagery and sustained flashing lights that may affect those with Photosensitive Epilepsy.
Source Epilepsy Action

April Social evening

Do you have a family member or a friend with epilepsy or maybe you have epilepsy yourself.
We are hoping to hold a social event in April where people with epilepsy can chat to other people with the condition.
To hold this event we will need enough people to show an interest in coming along so if you would like to attend please phone our helpline on 01473 461407.
There will be advice on claiming benefits, sign posting to other useful Organisations and access to our own free library of Books and DVDS

VNS Therapy

Are you suffering from seizures that your medication alone can’t control?
when medication can’t provide the control you deserve, it’s time to consider other options. 1 in 3 people with Epilepsy have the kind that is resistant to anti-epileptic drugs.
To find out more about VNS talk to you Epilepsy Nurse or Neurologist about drug resistant Epilepsy(DRE) and VNS Therapy. You can also download the DRE Discussion Guide designed to help you have a conversation about the next steps in your treatment plan.
vnstherapy.co.uk/DRE-Discussion-Guide.pdf
Please note having a VNS fitted is no guarantee of stopping or reducing seizures the same as medication it can help some people and not others.

Depression and Epilepsy

Although around one in six people will experience depression at some point in their lives, this rises to affect one in three people with epilepsy. And in people with drug resistant epilepsy, the chance of having depression increases to 55%. It’s been recognized that depression and epilepsy can go hand in hand- some even think they share a common cause.
It can also occur in people who are taking some epilepsy medicines or if they’ve had their dosage increased. Conversely there are studies that suggest taking antidepressants may increase the likelihood of seizures.
Five tips for Mental Wellbeing

1. Try something new
Taking up learning a new skill or a new hobby can feel rewarding and give you a sense of achievement. Doing something relaxing like knitting, painting or gardening can help reduce stress which could help with both epilepsy and depression.

2. Take Five
While it’s good to keep challenging yourself it’s not good to overdo it at work or school. It’s important to take your breaks when you can-leave your phone and go outside for some fresh air and stretch your legs.

3. Reach Out to Others
Good relationships matter. If possible, connect with your family, friends, colleagues and neighbours -they build your sense of love , belonging and provide emotional support. You could even meet new people by volunteering your time or joining a club. Epilepsy Action’s coffee and chat group’s held across the UK and you can talk and share about your experiences in a relaxed environment.

4. Stay Healthy
It’s important to eat a well-balanced diet and exercise regularly if you can. I the meantime, try and cut down Caffeine, Alcohol and Nicotine. Too much of these could worsen or trigger seizures.

5. Be Mindfull
In this chaotic world, mindfulness is the art of focusing your full attention on the present and accepting it. Being mindful can help you help you enjoy life better.

Depression has many symptoms and can come on gradually so it can be difficult to notice when something is wrong. Depression can interfere with your life, relationships and work. many people with Depression can feel like they Lose interest in life and can’t enjoy things, Feel like they can’t cope, Feel extremely tired, Lose interest in sex, Feel useless or hopeless, move or speak slower than usual.
The NHS advises to seek help if you’re experiencing the symptoms above or you’re having low moods lasting longer than two weeks. If you start to feel like your life isn’t worth living or you want to harm yourself, get help straight away.
Who Can Help
contact Samaritans on 116123 for 24 hour confidential support. Call your GP and ask for an emergency appointment, Call 111 out of hours they will help you find the support you need to access psychological therapies like cognitive behavioural therapy ( CBT) or counselling on the NHS visit: beta.nhs.uk/find a psychological-therapies-service
For Epilepsy support call the Epilepsy Action Helpline on 08088005050.
Source Epilepsy Action.

The Ipswich Epilepsy may be able to pay for some counselling subject to committee approval and funds.

Take Action

If you’re not sure what to say to people when they ask how they can support you during a tonic-clonic seizure, Epilepsy Action has a handy acronym. You can let people know that following these simple steps can make all the difference to someone having a seizure.

A ssess
Assess the situation and remove any nearby objects that could cause injury.

C ushion
Cushion their head (with a jumper,for example) to protect them from head injury.

T ime
Check the time -if the jerking lasts for longer than five minutes, you should call an ambulance.

I dentity
Look for a medical bracelet or ID card-it may give you information about the person’s seizure and what to do.

O ver
Once the jerking has stopped, put them on their side. Stay with them and reassure them as they come around.

N ever
Never restrain the person, put something in their mouth or try to give them food or drink.

Epilepsy Action always advises that you call an ambulance if:
You know it’s a persons first seizure or the seizure lasts for more than five minutes or one seizure appears to follow another without the person gaining consciousness in between or the person is injured or you believe the person needs urgent medical attention.

On The Case

One thing many of us find difficult is the unpredictability of seizures.
Sometimes,they come with no warning and no trigger,and there is no way of no way to plan around them.
Preparing those close to you about what they can do when you have a seizure is a really good thing to do where possible. But you may not always be with someone you know or who knows you when you have a seizure.

Why not try out this handy trick?

If you have a clear case for your mobile phone, put a first aid card in it-it’ll be the first thing people see. You can get a card from: epilepsy.org.uk/firstaidcard
Soure Epilepsy Action

Love Logic a poem writen by Mr. N. Yule

Such becomes a need of fantasy reshaped to form a living desire and the apprehension felt to so derive.
Fulfilment means the operation of true love firm feelings, floated from one unto another to show our very best. Such dealings dealt in doing as shown presentation of their very wanting need.
Many thoughts of course are yet outstanding as developed in their prime, and being so much the make-up of what we call our time.
New dreams and great endeavours that form all current play, to list those demands, or yes those wishful aims, their successes in conclusion, that fulfil our loving ways.

This poem was written by Mr. N Yule founder of the Ipswich Epilepsy Support Group. If you like this poem this and many more can be found in the book entitled Ten of the Best A showcase of Poetry published by United Press.