A teenager with a rare condition that causes excessive sleepiness is bidding to raise funds to help find a cure.
Sixteen-year-old Elle Hepplestone has narcolepsy and cataplexy, which means she can fall asleep at any moment.
The condition has affected her studies at school and college as well as disrupting her social life. It also means she cannot travel unaccompanied, will not be able to drive and is likely to find it harder than most young people to get a job.
Elle, who lives at Golcar, took medication in a bid to control her condition, but the side-effects caused a marked change in her behaviour as well as a facial rash which meant she had to see a dermatologist. She has now stopped taking tablets and says she feels better for it.
“At school I would be falling asleep all the time,” said Elle. “When I was on medication I was getting into arguments. It sent me a bit crazy!”
Elle is studying hair and beauty at Kirklees College, having become interested in the subject after using make-up herself to hide her rash. “I don’t think the teachers at school understood,” said Elle. “They understand it a bit better at college when I need a nap.
“It can come on suddenly. It seems to be better when I am doing something practical. If it’s something I have a lot of interest in I find it easier to stay awake.”
But when narcolepsy strikes, Elle can be asleep for anything from a few minutes to a few hours and at college can sleep for half an hour before waking to find there’s only 10 minutes of the lesson left. “I try to keep up by copying from a friend so I’ve got something in my book for the next lesson,” she said.
Elle said her family realised there was something wrong when she was nine, but she was only diagnosed at 12.
About one in 2,500 people have narcolepsy, a neurological condition that affects the brain’s ability to regulate the normal sleep-wake cycle.
It leads to symptoms such as disturbed night-time sleep and excessive daytime sleepiness. Cataplexy is a temporary involuntary loss of muscle control, usually in response to strong emotions.
Elle’s mum Cheryl said: “Nobody really understands it. Even when she is asleep, it’s Rapid Eye Movement (REM) sleep so she is never getting a deep sleep.
“Imagine how you would feel if you hadn’t slept for 72 hours. That’s how she feels every day.”
Now Elle is planning to raise cash for the Narcolepsy UK charity by taking part in its 30 Walks in 30 Days Challenge throughout January. She aims to walk for at least 20 minutes every day – starting on January 2 – and is seeking sponsors. Cheryl will join her on the walks.
People can also donate direct to the charity by visiting www.narcolepsy.org.uk