Meet the real life Sleeping Beauty who has rare disorder which sees her nap up to 22 hours a day
Watch: Woman with rare condition shares what it's like to sleep for up to 22 hours a day
A woman, who describes herself as a "real life Sleeping Beauty", is living with a rare disorder which sees her nap for up to 22 hours a day.
Joanna Cox, 38, from Castleford, west Yorkshire has idiopathic hypersomnia, or excessive daytime sleepiness, which is a condition that causes people to fall asleep repeatedly during the day.
She was diagnosed with the condition, which once saw her sleep for four days without waking, after years of excessive snoozing and struggling to stay awake during the day.
The rare disorder leaves sufferers with extreme daytime sleepiness, struggling to be roused and feeling "unrested" and "mentally foggy".
For Cox, living with the condition means she “never feels rested” and she will often sleep between 18 and 22 hours every day.
Before her diagnosis, Cox found herself falling asleep in unusual places, including in a club during a night out and behind the wheel of a car.
The mum-of-two survives on protein shakes and ready meals because they’re “quick” to consume before she falls asleep again.
Cox has also been hospitalised with low blood sugar after spending four days asleep without waking up to eat any food.
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While she isn't sure what has caused the condition she was diagnosed with in October 2021, Cox says she is desperate to find a way to manage her symptoms as it is "ruining my life".
"I'm like a real life Sleeping Beauty," she says about her disorder. "I can't be woken up once I'm asleep.
“I can’t work, I can't drive, and I can never make any plans because I don’t know if I’ll be awake.
“I wake up not knowing what day it is or how long I've been asleep for," she continues.
"It's such an isolating condition to live with."
Cox first began experiencing symptoms in 2017 when she noticed herself feeling extremely tired during the day.
She ran her own cleaning company and struggled to get through the day without needing to rest and nap.
Eventually Cox started falling asleep while out in the car so had to give up driving.
Over the next few years, she went back and forth to the GP try and get to bottom of her fatigue.
“It started out of nowhere – nothing triggered it, I just felt really tired," she explains.
"At first, they thought it was depression, and I was referred to a mental health specialist.
“But that was ruled out because I didn’t have any other signs apart from tiredness.
“I met with an ear, nose, and throat specialist in case an issue with snoring was affecting my sleep."
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Following a series of tests to rule out an infection, multiple sclerosis and even cancer, the cause of Cox's excessive napping remained unknown.
“No one could diagnose me and all the while I was getting worse," she says.
“In the end, at around 2019, I had to quit my job."
After speaking with several different psychologists, Cox was eventually referred to a sleep clinic at Pontefract Hospital, Yorkshire in October 2021.
She was monitored overnight and officially diagnosed with the rare sleep disorder, idiopathic hypersomnia.
Despite her diagnosis, the condition has continued to worsen and now Cox struggles to stay awake for longer than a few hours a day.
She says she tends to feel most alert during the early hours, so is often out walking her dogs – two cockapoos, Autumn, and Bobby, at around 2am.
As well as struggling to stay awake, Cox says she suffers "vivid hallucinations", including having a recurring vision of “hundreds of spiders crawling” all over her bed.
While she currently lives alone, she is regularly visited by her two daughters Caitlin, 20, a student nurse, and Isabelle, 18, a waitress.
The pair come over to check on their mum and walk the dogs if she hasn't woken up to take them outside, but the condition has taken a toll on the family.
“It’s been really tough on my daughters,” Cox continues.
"When it first happened in 2017, they were both living at home, and everything changed overnight.
"I couldn't drive them to school because I was falling asleep at the wheel, so we had to arrange it through the school.
“Isabelle has seen me at my worst and basically had to step up and be mum – waking me up as best she can to make me eat or help me to the loo.
“I’ve had carers in the past, but no one really knows how to look after me because it's such an unusual condition.
"I can wash and feed myself but it's just getting me to wake up which is impossible.
“Someone made me a cup of tea once, but I was half asleep when I tried to drink it and ended up scolding myself.
“Now I just try and deal with it by myself which can be difficult, but I don’t know what else to do.”
Living with the condition has impacted other areas of her life and Cox says at the moment she is having to avoid making plans and instead focus on keeping life simple.
"Before I was diagnosed, I fell asleep in a booth in a club on a night out," she explains.
"The bouncer thought I was just drunk and kicked me out – it was so embarrassing and upsetting.
"I had no idea what was wrong with me."
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Cox also avoids dating, believing she would be unable to maintain a relationship due to the disorder.
"I've been single for seven years now," she says.
"I don’t entertain the thought of having a partner ever again.
"I can't imagine being with anyone with this condition."
Though she has tried lots of different therapies and medications, Cox hasn't found anything that relieves her symptoms.
She is hoping to find an expert who can help her live a more normal life.
“It’s really upsetting when people just say I’m "lazy" or need to set more alarms,” she says.
"One day recently, I was awake for 12 hours and that was the longest I've been awake in nearly six years.
"The shortest is usually just a few minutes, enough time to wake-up, have a drink and then fall back to sleep again.
“I’m really hoping that sharing my story will help me reach others with the condition, and hopefully, find a doctor who can provide the medical help I need."
Additional reporting SWNS.
