We asked 1,000 people affected by epilepsy:
“What’s the one thing you wish the public knew about the condition?”
And the one thing most people wished for?
For more people to understand that epilepsy is more than having seizures.
Together we can improve the public’s knowledge and compassion and make that wish come true.
Please donate today and help make it happen
Paul and Michelle share that wish – read their story and find out why they too want to get epilepsy out there this Purple Day.
"Just because it's not always visible doesn't mean it's not there"
I want to make people realise what epilepsy is and how it affects you. Just because it's not always visible doesn't mean it's not there.
I used to race bikes – I’d just won the championship actually. Soon after I had a full-on tonic-clonic seizure. No one in the family had epilepsy, so we knew nothing about it. The hospital did tests and said it was an epileptic seizure.
I was working in advertising at the time. When I was first diagnosed, I told work I couldn’t drive anymore. They said it would be OK, but, soon after, they said things were getting tight and they were going to have to make me redundant.
Employers shouldn’t just think, 'Ah, well - he's not well, let's get rid of him.' Because that's what's happened to me – three times now!
It needs to change. Just a basic understanding of epilepsy and what you can do to help someone having seizures.
"People don’t understand the responsibility I feel"
A lot of people mistake my husband Paul’s seizures for being drunk or on drugs. It really irritates me. Until you live with epilepsy, you don’t realise how dangerous it can actually be.
At night I pray I can hear him snoring so I know he’s alive.
It's exhausting for both of us. Paul's had suicidal thoughts. He says he doesn't want me to feel like his carer. Well, I don't. Paul's my husband. To me he's just a person who happens to have an illness.
But it’s no good pretending it’s a normal life, because it’s not.
And it's so hard to make people understand that. If we say we're tired, it's not just because we haven't had any sleep – it’s because we're mentally exhausted.
Paul would love people to be understanding and know what to do to help, not just think he’s drunk or on drugs.
"You can make a difference"
Not enough people in the world understand what epilepsy is, or how it can make your life so difficult.
Whether that’s members of the public who don’t recognise a seizure or know how to help, or employers who don’t know how to support a colleague, it’s up to us to stand together and raise that vital awareness.
That’s Paul and Michelle’s wish for Purple Day this year – if it’s yours too, please donate today and help make it happen.
Free resources for your fundraising
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Purple Day products
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