It's irresponsible and dangerous for
@MileyCyrus
to announce her new album with the video she has. It's an unnecessary risk for people affected by photosensitive epilepsy and flashing images. We encourage Miley and
@RCARecords
to take the video down and re-think the marketing.
All people with epilepsy deserve to be able to access the best possible care and treatment for their condition. It is unacceptable that excessive profit has come at the expense of patient safety and put people with epilepsy at risk of further seizures. 1/3
Beth had her first seizure aged 13 and fell unconscious for 15 minutes. Eleven years on, Beth is a 200m record holder and British champion. We are proud to announce
@BethDobbin
as a new Epilepsy Action ambassador 🙌 Read her full story -
#GreatNorthRun
Today is Purple Day, the international awareness day for epilepsy. What will you be doing to raise awareness of epilepsy today? We know it's going to be a lot different this year but please get involved in any way you can! 💜 -
#PurpleDay
Today is Purple Day, which means that hundreds of people like you are preparing to play their part in raising valuable funds and awareness to help people with epilepsy.
How are you going to make a difference this year?💜
#purpleday
We support this move. The crisis is already affecting people with epilepsy, with 2 in 5 telling us they're having more seizures as a result of stress.
Many are also cutting back on their energy use, which is already coming at a huge cost to their health, safety and wellbeing.
I have just sent the Chancellor
@Jeremy_Hunt
- supported by major charities - a letter asking him to postpone the government's 20% increase in energy bills on 1 April.
The letter is at attached (plus supplementary explanation) please read and feel free to share
Just 2 months ago for Purple Day,
@catdeeley
you helped raise awareness about epilepsy & still end up saying something thoughtless.
Your careless use of language has real consequences for people with epilepsy who already face so much stigma.
This is why we need more awareness!
This week is
#NationalEpilepsyWeek
and the theme this year is
#EpilepsyMatters
.
We are delighted to be collaborating with the wider epilepsy community to raise awareness of the impact epilepsy has on people's lives.
Watch this space for more throughout the week 💜
This is Ellie. Ellie began having tonic-clonic and absence seizures just before her 13th birthday in 2013. This week Ellie will be two years
#seizurefree
🙌 Ellie's mum Jenna is so proud of her saying "she didn't let it phase her" as she's grown up the past 5 years 💜
It's
#PurpleDay
, which means people like you will spending the day raising cruical awareness and funds for people with epilepsy.
We want to say a big thank you to you all!
Make sure you tag us in all your
#PurpleDay
posts 💜
“From having hundreds of seizures a day, Bailey is now living his best life since taking cannabis-based medicines. He's doing everything from talking and swimming to woodwork and cookery.
“We urge the UK government to take action - we don't have the luxury of time.”
@gameinformer
Thank you for publishing this fantastic run down of how people can try to keep themselves safe while playing the game. Important to point out the accessibility issues too💜
If anyone needs more info on photosensitive epilepsy, they can find it here -
We know there are so many myths and misconceptions about epilepsy. This
#PurpleDay
- let's set the facts straight.
What is epilepsy? 🤔
Watch our new video 👇
@DirtyEffinHippy
Thank you for writing this really fantastic run down of how people can try to keep themselves safe while playing the game. Important to point out the accessibility issues too. Shared 💜
A very welcome announcement from
@jeremy_hunt
about funding for
#epilepsy
research in today’s budget.
We look forward to hearing more details and would welcome the opportunity to discuss what areas of epilepsy research should be addressed alongside
@EpilepsyInst
Researchers have developed a brain scanner you can wear while moving.
“This is an exciting advancement with the potential to improve epilepsy testing for many patients." - Tom Shillito, Health Improvement and Research Manager
@epilepsyaction
Read more:
"I lost everything, I lost all my money. I lost custody of my child. I lost my career. I lost all those things that you feel are your real identity and your life. "
Thank you to Sharon for speaking out about her
#Epilepsy
and the impact it has had on her life and career.
Sharon Stone reveals she suffers from seizures after doctors found a bleed on her brain over twenty years ago which has seen her being offered less work
#SharonStone
#SEIZURE
On
#MentalHealthAwarenessWeek
let's talk about
#Epilepsy
. It can often be more than the condition. It can be a lonely and isolated place.
Please call our helpline on 0808 800 5050 or email helpline
@epilepsy
.org.uk
You are not alone.
#MHA
Happy
#EpilepsyWeek
💜
Keep an eye out for new resource launches, videos, discussions and stories showcasing your voice 📣💬
Let's put epilepsy in the spotlight!
We are very sad to hear about the passing of
@DisneyChannel
star
#CameronBoyce
. His family said Cameron passed away in his sleep due to a
#seizure
. This bright young actor was known for his roles in the Disney franchise
#Descendants
and TV show “Jessie."
It’s important to challenge unfair pricing of anti-epilepsy medicines which could affect their affordability to the NHS and limit their availability to people with epilepsy. 2/3
Special thanks to all the Epilepsy Specialist Nurses, Neurologists, Epileptologists and all our NHS staff this
#NHSBirthday
#NHS70
💜 🎉 Celebrate with us and share some of your positive NHS stories today 👇👇
"As a child you get the support that you need... as an adult it stops. I'd like to be told what to do in terms of my independence... what role can I play to make myself safe"
@PatienceDengure
spoke to
@SkyNews
about epilepsy and neurological services
@NeuroAlliance
#NeuroSurvey
Today is
#EpilepsyDay
, and the theme being discussed is
#MyEpilepsyJourney
.
We would love to hear your epilepsy stories today. Please share in the comments your experiences with epilepsy and we will share throughout the day.
For anyone who hasn't seen it yet, here's our new TV advert.📺
If you see our ad on TV, make sure to get a pick of it and share it with us using
#EpilepsyAction
Helping someone who’s having a tonic-clonic seizure doesn’t have to be difficult. All you have to do is CARE.
C – Comfort
Cushion their head with something soft to protect them from injury
Thank you so much
@thismorning
and
@DrZoeWilliams
for highlighting seizure first aid, today on
#PurpleDay
💜
Remember when someone has a seizure all you have to do is CARE.
You can also re-watch online via
@ITVX
Would you know what a focal seizure looks like? Epilepsy can look very different depending on type. Thank you to Sophie for sharing this with us 💜 Find out more about focal seizures at
#WednesdayWisdom
"It's sad to know there's such a high statistic who aren't employed, that want to be employed. But I think that's down to maybe a lack of education, the jobs not understanding or unwilling to take on the risk"
Thank you
@BBCTheOneShow
for highlighting the challenges people with epilepsy face.
Was great to hear
@EdiBow
speak out about her epilepsy and the importance of talking about the condition to help improve understanding.
See more on our campaign here:
November is Epilepsy awareness month.
According to Epilepsy Action, 4 in 10 UK managers admit they wouldn't hire a person with the condition.
We sent
@EdiBow
to find out how one institution is trying to make a difference.
Watch in full 👉
#TheOneShow
"I wish people could see what else happens to me outside of the 20 seconds - 2 minutes when I have an absence seizure. I think people think that the seizures are the worst part of having epilepsy, and that it is the only thing we have to deal with."
👉
Today is
#PurpleDay
! Purple Day is a day of celebration, spreading awareness and raising vital funds for those affected by epilepsy 💜💜.
We'd love to see what you're up to today, so get your camera at the ready and tag us in your fundraising posts.
The way to get people with epilepsy into work is to address the barriers to employment faced by people with disabilities, & not by pursuing harsher punishments for people already struggling on benefits during a cost-of-living crisis.
#AutumnStatement
It's concerning the government is considering moving assessing fitness to work from GPs to "specialist work and health professionals".
People with epilepsy have experienced problems with PIP assessors who didn't understand the condition.
This isn't the kind of support they need.
Steph & Dom: Can Cannabis Save Our Son? features ex
@C4Gogglebox
stars
@stephanddom
and their son Max (who has severe epilepsy) finding out more about cannabis-based medicines. Our helpline will be open between 9pm-11pm for extra support on Monday. Call for free on 0808 800 5050.
Beth had her first seizure aged 13 and fell unconscious for 15 minutes. Eleven years on,
@BethDobbin
is a 200m record holder and British champion. We are so proud that Beth is going to be opening our Bradford 10k event this weekend 🙌 Read her story -
Congratulations to Viktorija Senkute who won a bronze medal in the women’s singles rowing on Saturday!
Viktorija was diagnosed with epilepsy at the age of 15, but has never let it stop her from achieving her dreams.🧵
There are thousands of people across the country who dream of being able to work, but epilepsy, like so many other frequently debilitating conditions, stands in their way. We hope nobody at
@Telegraph
ever has to face that nightmare, for themselves, or their loved ones.
Disabled people are under attack.
Disabled children are under attack.
Carers are under attack.
This bile, this rot, this vile, RW, hate-driven cold sore of a debate was instigated by IDS, blown up by
@JeremyVineOn5
& now this abomination of a tabloid.
I’m shaking with rage.
Would you know what an absence seizure looks like? Here is 7 year old Alfie with a powerful demonstration of what to look out for. For more info on absence seizures, head to
#PurpleDay
#EpilepsyAwareness
Thank you to everybody who has contacted us about TikTok videos which could be distressing or harmful to people with epilepsy. We are pleased that TikTok has decided such videos are in violation of its community guidelines, and is working to remove them.
🌞🥵 It's due to be a scorcher today. Remember, heat and lack of sleep can lead to an increase in seizures for some people. Here's some great information on how to cope in hot weather -
#EpilepsyAwareness
#Seizures
#heatwave
Happy
#PurpleDay
from all the Epilepsy Action staff working from home!
Despite everything, this is OUR day to celebrate. We can still raise vital epilepsy awareness and be here to support each other 💜💪
Let us know what you're doing this Purple Day below 👇
An impossibly huge thank you to all the NHS staff and carers who work tirelessly for us all, not only during these difficult times, but all the time.
You're all heroes, not only for the epilepsy community, but for everyone 💜 👏👏👏👏👏
#ClapForNHS
#ClapForCarers
#ThankYouNHS
Do you think that general first aid training should include guidance on dealing with seizures?
📝 Please take a moment to sign this petition, which calls for seizure first aid to be included in wider first aid training:
National Epilepsy Week 2019 is here! This is an opportunity to put epilepsy and your experiences in the spotlight. Happy to be working with other epilepsy charities this
#EpilepsyWeek
to raise awareness about seizure first aid!
Thank you to
@KatieOMalley__
and
@Independent
for putting together this article on Cameron Boyce's tragic death and highlighting what epilepsy is, how it affect's people and how to help if someone is having a seizure.
17-year-old Angus Bain is hoping to have a seizure-free Christmas, after undergoing life-changing laser brain surgery just 11 weeks ago💜.
Read the full story below:
Happy
#PurpleDay
from all of us at Epilepsy Action.
However you’re spending this Purple Day, thank you for doing your bit to help us create a world without limits for people living with epilepsy. There is still time to donate:
Thanks to you, we've been able to open our helpline for longer on evenings and weekends. Grace from our helpline team tells us how
#YouMadeItHappen
#YouMadeItHappenDay
"I'm struggling with my epilepsy, mental health and worried about seizures"
Brain:
Don't say it
Don't say it
Don't say it
Don't say it
Don't say it
...do say it
It's time to talk. If you need us, we're here. Call our freephone helpline on 0808 800 5050.
#InternationalMensDay
A massive purple THANK YOU to everyone in the epilepsy community for raising your voice, raising vital funds, wearing purple at home or in the office and making a difference with your stories this
#PurpleDay
We couldn't do it without you 💜💜💜
Epilepsy caused by evil spirits? Seriously?! It’s 2023.
It is a physical, neurological condition and it's dangerous to suggest it can be treated by exorcism or prayers.
We hope
@BBCPanorama
reflects this in its programme tonight:
Would you know what an absence seizure looks like? Here is 6 year old Alfie with a powerful demonstration of what to look out for. For more info on absence seizures, head to
#WednesdayWisdom
Remember today, and every day, that if you think someone you care about might be struggling, with epilepsy, mental health, or anything else, it's ok to
#AskTwice
.
#WorldMentalHealthDay
On
#MentalHealthAwarenessWeek
let's talk about
#Epilepsy
. It can often be more than the condition. It can be a lonely and isolated place.
Please call our helpline on 0808 800 5050 or email helpline
@epilepsy
.org.uk
You are not alone.
#MHA
IMPORTANT UPDATE
People with epilepsy are at a slightly increased risk from
#COVID19
, according to a new study from
@bmj_latest
. While this is worrying, people with epilepsy will be a higher priority for the vaccine, subject to MHRA confirmation. (1/2)
A big misconception about epilepsy is that all seizures are tonic-clonic seizures, where the person drops to the floor and shakes.
There are actually many different types of seizure - how many can you name? 🧠
#WednesdayWisdom
Happy Purple Day everybody!
Of course it's a bit different this year, but we hope you find a way to celebrate at home. Everything you do and every penny you give will make more of a difference now than ever before for the people who need our support 💜
"I don't want to get married and make my boy or girl be born with fits... I don't think it's fair to get married"
How do you think attitudes about living with epilepsy have changed since this video was filmed in 1957?
#EpilepsyWeek
#ThrowbackThursday
#TBT