Leanne Lyon was born with a small, non-cancerous tumour lodged in her brain – but as she got older it caused her to have seizures with bizarre and embarrassing side effects.
During the episodes, which last for up to 30 minutes and can happen five times a day, Leanne often finds herself stripping right down to her underwear – and she doesn’t know what’s happening until she comes round without her clothes on.
The seizures can also sometimes leave her incontinent, and she’s been left absolutely mortified after wetting herself in public – and she’s resorted to wearing incontinence pads just in case.
But while the quirk might appear funny to onlookers, Leanne says the side effects of the seizures are ruining her life – and at just 42, she relies on a carer to help her and her two children as she’s unable to hold down a job.
Leanne, from Duston, Northants, said: “It’s completely embarrassing.
“To be honest, I’m lucky the police have never been called out for indecent exposure.
“When I have really bad seizures, it’s sort of like sleep walking and I don’t know the full extent of what’s happening – until I come round and I realise I’ve taken my clothes off.
“When it happens in shops or public places it’s humiliating.
“You wouldn’t know there’s anything wrong with me at first glance, so people don’t know it’s down to the tumour.
“People do make hurtful comments, but I just brush it off.
“I’ve even tried to put my daughter’s nappies on in the middle of a seizure – I’m just completely out of it.
“I got one once at the check out in WHSmith’s, it had come on suddenly and I ended up wetting myself right at the till, standing in a puddle.
“But I didn’t know anything about it until afterwards, when I came to in their back office.
“I’ve completely stripped off in the middle of Wilkinson’s before too – I just wanted to curl up and die when I came round.
“It’s mortifying, and it’s ruining my life.”
Leanne was born with a small, non-cancerous tumour lodged in her brain.
Medics were left baffled by her condition, and after she started having seizures at just four years old she was diagnosed with epilepsy.
At 17 Leanne had a risky brain surgery, a left temporal lobectomy, to try and remove the tumour – but it only made her condition worse.
It wasn’t until she was 29 that Leanne was finally diagnosed with hypothalamic hamartoma – a rare condition where a non-cancerous brain tumour can cause seizures, blackouts and memory loss.
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But despite finally having a diagnosis, Leanne is still suffering with her illness every day – and the brave mum is now fundraising for keyhole surgery in America.
The condition is so rare, affecting only one in every 200,000 people, that the surgery is not offered in the UK – which means Leanne needs to raise £100,000 to fund the procedure.
Leanne said: “It’s really scary – when I was first diagnosed, I thought I was going to die.
“I’m lucky it’s not cancer, but it’s still ruining my life.
“I just want to be a normal mum – sometimes I feel like my kids look after me more than I look after them, I want them to have a normal childhood.
“That’s why I’m trying to get this surgery in America – I’m a good candidate for keyhole surgery, so it’s just a case of raising the money.
“The tumour is only about the size of a little fingernail, it’s incredible that something so small can cause so much damage.
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“The seizures completely take over my life – they’re not what people think of as a ‘normal’ seizure, so when it happens in public people don’t understand.
“I get at least five a day, and they can last up to half an hour – sometimes I get a feeling before but often they come out of nowhere, so I can’t go anywhere with the children without a carer.
“If I try and go anywhere on my own there’s always the risk of a seizure happening at any time.
“Living like this is dangerous and terrifying – it’s not a life at all.
“I can’t go out with friends and have fun, because I never know when I might have a seizure and end up stripping off.
“I’m just desperate to find a way to be normal.”