I am writing to ask your readers to seek out and celebrate the epilepsy heroes in your community.
Epilepsy affects over 55,000 across Scotland, some of them helped by truly inspirational people. Those who think nothing of going out of their way to lend a hand or even save a life, when someone really needs it. This year, national charity Epilepsy Action wants to thank them and honour their efforts publicly with a Helping Hands 2021 award.
This past year has been such an unsettling time, especially for those living with invisible conditions like epilepsy. Pandemic or not, so many people and families have struggled behind closed doors.
Community heroes have often been a lifeline, stepping up in a crisis. It could be a teacher who has been a legend in lockdown. A total stranger who rallied during a seizure. Or a local group who took on an epic fundraiser for epilepsy.
Whoever they are, we want to hear all about them!
Last year, my daughter 8-year-old Sienna picked up an award for the care she gives to her sister, who has severe epilepsy and complex needs. Sienna does so much each day and this thankless job goes unnoticed by the outside world.
She is a remarkable little girl, who doesn’t even know the difference she makes to her sister’s life. I wanted to tell her – and everyone else – how proud we are of her.
This summer, Epilepsy Action would love for your readers to be inspired by amazing people like Sienna, and to nominate more Helping Hands heroes. To do this, visit epilepsy.org.uk/ awards before the 15th of August. We can’t wait to hear about your heroes, to celebrate and thank them on behalf of people with epilepsy everywhere.
42% of people with epilepsy in Scotland want you to know this one thing … (Purple Day, 26 March)
New research shows that public understanding of epilepsy doesn’t always match with the reality faced by those living with the condition. Friday 26 March is Purple Day, the global day for epilepsy, and a chance to redress the balance. There are over 55,000 people living with epilepsy in Scotland.
In Epilepsy Action’s new poll, nearly 1,000 people affected by epilepsy were asked for the one thing they wished the public knew about the condition.
42% of those surveyed in Scotland said they wished people knew that the impact of living with epilepsy goes far beyond seizures. Side-effects of medication, memory problems and impacted mental health are just some of the things that can affect people.
A quarter (24%) of people said their biggest wish was for better awareness of the many different seizure types. Other hopes included more understanding that not all seizures are triggered by flashing lights and that epilepsy is a fluctuating condition.
However, new figures suggest much of the general public remains unaware of the ripple effect of the condition and are dismissive of how it affects people long-term.
One in four people (23%) thought that epilepsy has no impact on a person’s life, aside from having seizures. A third said that the condition does not impact on a person’s mental health.
In one revealing statement, two thirds agreed with the suggestion that people ‘just need to be more positive when living with health conditions’.
Yet, with a similar number of people (68%) saying they would be afraid to even witness someone having a seizure, the charity says this exposes a stark disconnect in understanding and compassion towards people with the condition.
Louise Cousins, director of external affairs at Epilepsy Action, said: “These new insights are stark but not surprising. The impact of living with epilepsy can take a huge toll on people’s lives, their happiness and wellbeing.
“Everyone’s experience of epilepsy is different, but it can’t be overcome just by ‘being more positive’. This attitude needs to change. Lack of knowledge and empathy feeds into fearful, harmful assumptions and people with epilepsy feeling further misunderstood and dismissed.
“By giving them a voice and encouraging conversations on Purple Day, we can really improve society’s knowledge and compassion and close the gap on this chasm of understanding.”
Yorkshire comedian Maisie Adam was diagnosed with epilepsy when she was 14. She is backing the campaign: “It’s totally normal for people to have those misconceptions about epilepsy, because of the information that’s out there at the moment. So much is frustratingly simplified, Hollywood-ified, it’s very bite-sized.
“It’s just the understanding that’s important and I think that comes from both sides. It’s about us being understanding of why people have those misconceptions but just hoping that people don’t assume – that they can hold back on any assumptions until the facts have been given. Epilepsy is so different for every single person.
“Be open to that huge variation. You’ll have your misconceptions, but don’t assume.”
Epilepsy Action has released a new awareness video on YouTube to coincide with Purple Day and to promote understanding of the condition. The charity is also urging supporters to take part in virtual fundraisers and to celebrate #purpleday on social media.
Support and information for anyone affected by epilepsy are available at epilepsy.org.uk or by calling the Epilepsy Action helpline on 0808 800 5050.
To support Epilepsy Action’s Purple Day appeal and help people affected by epilepsy, visit epilepsy.org.uk/purple
I am writing to ask your readers to turn their world purple for epilepsy this Purple Day. The international day of epilepsy awareness, Purple Day falls on Tuesday 26 March and sees people across the globe come together to dispel the myths that surround epilepsy and share their stories. National charity Epilepsy Action would love for your readers to get involved.
There are around 55,000 people living with epilepsy in Scotland. This Purple Day (26 March 2019) you can help more kids and families live better with their condition. Donations are vital in funding our UK-wide network of support groups. They bring together parents and carers, giving them the confidence to deal with a diagnosis. Fundraising supports nurses, helping them to explain epilepsy to children in a way they understand. It also helps us to get vital resources to teachers, giving them the tools to help kids with epilepsy thrive at school.
Whether it’s giving purple makeovers, baking purple cakes or throwing a purple party, there are countless ways to celebrate Purple Day and fundraise too. Getting involved couldn’t be simpler. By visiting epilepsy.org.uk/purple, or calling 0113 210 8851, you can request your free Purple Day fundraising pack. The pack contains everything you need to make your fundraising a success. Epilepsy Action directly supports over two million people every year. The money we raise on Purple Day will mean we can help even more.
