And epilepsy is notoriously one of those conditions which is quite poorly understood by the general public.
But actually, how little is known about epilepsy is a bit of a surprise. For one thing, epilepsy is not that rare at all. It is one of the most common neurological conditions. There are around 600,000 people with epilepsy in the UK.
In a recent survey by Epilepsy Action, over two-fifths of respondents (43%) said they wouldn’t know what to do if they saw someone have a seizure.
But lack of knowledge is not the only thing at play for epilepsy. For this condition, there are actually a number of myths and misconceptions which are widespread in the UK and worldwide.
For instance, many people believe that seizures are always caused by flickering lights. That is not true in the majority of cases, only in a small number of people who have a particular type of epilepsy – photosensitive.
Some people also think a person can swallow their tongue during a seizure. This isn’t true either, and putting something in a person’s mouth to prevent this can actually cause a lot of damage.
Also, some people believe that epilepsy is caused by being possessed by spirits, or that you can catch the condition.
All of these things can lead people to completely misunderstand epilepsy. For example, the Epilepsy Action survey also found that more than a quarter of UK adults (28%) think that epilepsy is a mental health condition.
Helping understand epilepsy
If you are newly diagnosed with epilepsy, this can all end up being quite overwhelming. What does your condition mean for you? What should you believe about epilepsy? What do you need to learn about living with your epilepsy?
It might be that you have to come up to speed with the condition very quickly. And you might have to learn a lot of new things, and pick out the truths from the myths. Epilepsy is different in everybody, and how it impacts each of us is different. But a little help can go a long way to helping us face our challenges.
And this is where the Epilepsy Action Helpline is a fantastic resource. The helpline staff can give people with epilepsy vital support when they need it most. They can inform, support and point people in the right direction. They can also help other people, like friends, family members and employers, to better understand the condition.
Jane Turner is a professional golfer. She turned to the helpline when she was struggling with her epilepsy diagnosis.
“When I was diagnosed with epilepsy in 2012, it was a condition I knew almost nothing about,” Jane said. “Because of this, I felt very embarrassed by my epilepsy and actually a little ashamed.
“Speaking with the Epilepsy Action Helpline was what helped me to get past this horrible feeling. They helped me to understand my epilepsy and the repercussions of it, especially regarding my driving licence.
“When I was diagnosed, I was one of the top amateur golfers in Scotland, with a dream of turning professional and competing on the Ladies European Tour. The next months were difficult, I won’t deny that. But with the support from my family, friends and consultants and regularly phoning the Epilepsy Action Helpline, I pushed forwards. I now play on the Ladies European Tour Access Series and in August 2017 I won the Bossey Ladies Open in France, my first professional win!
“If in 2012 someone had told me that despite my epilepsy I would still be able to follow my dreams and build a successful career as a professional golfer, I wouldn't have believed them.
“I think that a very large part of the general public is in the same boat today as I was in in 2012, with very little knowledge about epilepsy. I believe this is why Purple Day is so important.”
On the end of the phone
Purple Day is the international day for epilepsy. Purple Day was founded in 2008 by Cassidy Megan in Canada. Over the 10 years that it has been going, it has become a global event raising awareness of epilepsy. At the very core of this day is a desire to make people feel more confident about their condition and less alone.
In support of this, Epilepsy Action is putting the Epilepsy Action Helpline in the spotlight this Purple Day. This service goes a long way to support and inform people with epilepsy, which can help build confidence.
The Epilepsy Action Helpline is the only epilepsy helpline providing information accredited by NHS England’s ‘The Information Standard’. Diane is one of the advice and information services officers. She has been working on the helpline for over 20 years.
“My day is usually a mixture of taking calls, answering emails and monitoring social media. There’s a huge range of enquiries and every single one is different.
“Because epilepsy is so individual, people are looking for many different answers and types of support.
“Some people can be quite desperate when they get through to us; sometimes, sadly, even suicidal. In many cases, they have no-one else to turn to. People can be lonely, scared and anxious.
“[But] it’s really rewarding helping someone to feel better and more informed. The knowledge and support people gain from a phone call or email can prompt them to rethink their situation. We try to give callers the tools to cope.
“We know people can’t always call during the working day. But we don’t have the staff to take all the calls that come in, or to be here in the evenings and weekends. So, this Purple Day appeal is vital to helping us recruit new staff to take more calls more often.”
This Purple Day you can help support the work of this vital service. You can make a donation on the Epilepsy Action website, or order your Purple Day wristband now.