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
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