This year Purple Day is 26 March. Fundraisers and campaigners across the world will be joining together to raise awareness and money for people with epilepsy. Send us your Purple Day story or join in the activities at: Purple Day – Epilepsy Action
Keep up with all the news on the day here…
Volunteer Louise held a bake sale for Purple Day. She said: “We had a great day and raised £150 in total. £80 at my bake sale, which one of our local councillors attended, and £70 from my running club on the evening.”
One supporter, whose dad is a farmer with epilepsy, has sent in an adorable picture of a new recruit this Purple Day.
Epilepsy Action’s media manager Chantal spoke to Paulette at BBC Radio Sheffield, along with Susie who shared her epilepsy story: Paulette Edwards – 26/03/2024 – BBC Sounds (12 mins approx in)
A huge thank you to everyone who contributed to helping us name our Paw-ple Day dog 🐶
We can now reveal that the cuddly pooch’s name has been chosen… and is: SUPER TROOPER!
Well done to the lucky winner. We will be contacting you shortly and Super Trooper will be with you soon. Thanks everyone for your fantastic support 💜
Footballer Matt Crooks shared his experiences with epilepsy with the Professional Footballers Association.
Crooks said that he hopes by speaking openly about his epilepsy, he will be able to support others who live with the condition. You can read more here: Matt Crooks on managing epilepsy in elite football (thepfa.com)
On This Morning, Dr Zoe explained what to do if someone has a seizure using our CARE first aid video.
The Mirror, Wales Online, Bristol Post and more featured Epilepsy Action on their online news sites: Symptoms of epilepsy as someone is diagnosed with ‘devastating’ condition every 18 minutes – Mirror Online
Taking things “day by day”
Taking things “day by day”This Purple Day, Epilepsy Action’s volunteers, members and users have been sharing how the idea of taking things “day by day” helps them manage the impact of their diagnoses.
One of those who shared their story was Deirbhile Corcoran (pictured right with her mum), 20, from Barnet.
Deirbhile was diagnosed with epilepsy in August 2023. She said the summer of her diagnosis was the scariest of her life.
“It’s easy to get sucked into the overwhelming and negative feelings surrounding an epilepsy diagnosis,” she says.
“I had to adjust to my life being flipped on its head. I was constantly anxious and paranoid about having a seizure in public and of all the things that could go wrong if I had one. Having to be so reliant on others made me feel, for lack of a better word, useless,” she adds.
“I wasn’t used to asking others for help, but I found it necessary for my health, and it made me feel like a burden. Of course, my family and friends were all amazing, and would never have viewed me or my seizures as a nuisance, but my perspective of my epilepsy was something I felt bitter towards.”
Deirbhile says she felt completely isolated in her diagnosis and struggled to come to terms with the “label” of epilepsy. The bias and lack of education from others in her life also made her feel deeply insecure – fear of judgement and misconceptions only exacerbated the issues she already faced.
“The bias and lack of education from others in my life made me feel deeply insecure. The anxiety and low mood that come with a diagnosis of epilepsy are already difficult enough to deal with, without the fear of judgment and misconception,” she says.
Deirbhile says that although feeling like others wouldn’t understand was unavoidable, talking to those around her was one of the most helpful things she did. Finding a community of people with the condition and reading their stories was invaluable. It made her feel less isolated and lonely.
Her mum was also a “lifesaver” during this period. “My mum really helped me change my mindset from such a negative outlook,” she says. “It was easy for me to get caught up in ‘mourning’ the life I felt like I had lost. All my mum kept reminding me was to take each day as it comes.”
Another volunteer sharing his story this Purple Day, is Andy.
Andy had his first seizure in February 2022.
“My wife said that she had been woken up by me falling out of bed while having a seizure. I had absolutely no recollection of this and was still very confused. I think my response was something along the lines of: ‘What do you mean I’ve had a seizure?’”
Before he had his first seizure, Andy was very active, working out three to five days a week: running, cycling, going to the gym. But his first seizure changed everything. He stopped exercising altogether “just in case” it happened again.
He became anxious about doing many everyday things, including being on his own with his children. At this point, he didn’t even have a diagnosis: epilepsy had just been mentioned as a possibility.
“After my official diagnosis in July 2022 things got worse because I didn’t really understand what it all meant. I contacted my local epilepsy nurse who went through my diagnosis letter in more understandable terms, but mentally I was ‘lost’ and I didn’t really know how to feel or what to think. Throughout my life I’ve always been of the ‘just get on with things’ mentality but with this I couldn’t, and didn’t really know what to do,” he says.
Andy adds that it has been hard making sense of it all: the seizure types, the restrictions, the complications, the treatment and the stigma still attached to epilepsy. But finding the right information and connecting to other people with the condition, especially on social media, has been key to overcoming some of the emotional challenges he has faced.
After this, Andy says he started to open up about his condition more to his wife, friends and other family members. Though he still struggles with the mental impact of his epilepsy, the key to dealing with this every day is talking and being as open as possible.
“Being fairly recently diagnosed myself, the advice I’d give people at the start of their journey is to talk, do research and ask questions to make sure you understand what doctors are saying.
“Being open and honest about my epilepsy really helps. Talk, talk, talk… Be honest with how you are feeling and, where possible, look for information to understand your condition better,” says Andy.
Kerry Smith from Lowestoft is hosting a Purple Ball, which she hopes will to raise more than £3,000 for Epilepsy Action.
Kerry was diagnosed with epilepsy when she was 28. She has generalised tonic-clonic and absence seizures. When she was diagnosed with epilepsy she was retired from her job and struggled with depression.
Kerry joined the Norwich Epilepsy Action Talk and Support group, and a year later she set up her own group in Lowestoft. She now wants the money raised from her Purple Ball to help others seeking support.
The Purple Ball is being held at the Wherry Hotel in Oulton Broad, near Lowestoft, on 30 March. The event includes a live band, raffle, auction and buffet, with guests expected to include Lowestoft’s mayoress Sonia Barker and Waveney’s Conservative MP, Peter Aldous.
You can hear Kerry telling Radio Norfolk about the Purple Ball here: Chris Goreham – Paternity leave – BBC Sounds from 2hr 19min.
On Just Giving, 10-year-old Lyla, who had her first seizure last year, is raising money to “support those less fortunate than her”.
On her page, the family said: “Lyla has taken her new challenges on in the most positive, resilient way. She doesn’t let it stop her doing things she wants to do, she doesn’t believe that it makes her any different and she isn’t scared to tell people that she has epilepsy.”
Mum and daughter, Anna and Ruby, from South East London are walking 10km this Purple Day.
Anna Shaw and her daughter Ruby will be walking three laps around Avery Hill Park in Greenwich. Also putting in the miles in support of people with epilepsy will be Anna’s Romanian rescue dog, Molly.
Anna was diagnosed with epilepsy when she was 13 years old. Despite the many challenges, Anna says her biggest achievement is living independently and becoming a mum to Ruby and her siblings.
“Epilepsy has never held me back and in the 30 years of having seizures, I’ve achieved all my dreams,” says Anna. “I’ve become a mum three times over and I am a pet mum to over more than 15 furry babies. I also have a well-established career and have always worked when I can. Fortunately, I’ve always been supported by wonderful bosses and now I volunteer in animal rescue and I am a qualified canine health consultant.”
Donate to Anna and Ruby here: www.justgiving.com/page/anna-shaw-1710518034924
Send us your Purple Day story or join in the activities at: Purple Day – Epilepsy Action
