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Rare disorder means woman sleeps 22 hours a day



A woman says she’s a real life ‘Sleeping Beauty’ thanks to a disorder that sees her nap up to 22 hours a day.

Joanna Cox, 38, once slept for four days without waking up due to idiopathic hypersomnia.

She was diagnosed after years of excessive sleeping and struggling to stay awake during the day. The rare condition leaves sufferers with extreme daytime sleepiness – often resulting struggles to wake-up and feeling “unrested” and “mentally foggy”.

The sleep disorder means Joanna “never feels rested” and she will often sleep between 18 to 22 hours every day.

Before her diagnosis, Joanna 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 even slept through flights and missed going on holiday to Spain with her daughter’s Caitlin, 20, and Isabelle, 18. She survives on protein shakes and ready meals because they’re “quick” to consume before she falls asleep again.

She also suffers from “vivid hallucinations” while fighting to stay awake and has a recurring vision of “hundreds of spiders crawling” all over her bed.

Joanna has even ended up in hospital with low blood sugar after spending four days asleep without waking up to eat any food.

She doesn’t know what caused the condition she was diagnosed with in October 2021, but is desperate to find a doctor who can help her manage her symptoms.

Joanna, who is currently unemployed, from Castleford, west Yorkshire, said: “It’s honestly ruining my life – I’m like a real-life Sleeping Beauty.

“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.

“It’s such an isolating condition to live with and I just really want some help.”

Joanna began experiencing symptoms in 2017 when she noticed herself feeling extremely tired during the day.

She owned her own cleaning company and struggled to get through the day without needing to rest and eventually nap.

Joanna even found herself falling asleep while out in the car and had to give-up driving.


(Joanna Cox/SWNS)


Over the next few years, she went back and forth to the GP try and get to bottom of her fatigue.

She continues: “It started out of nowhere – nothing triggered it, I just felt really tired.

“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.

“I went for loads of tests, doctors thought it was an infection, Multiple sclerosis and even cancer at one point.

“No one could diagnose me and it all the while I was getting worse.

“In the end, I had to quit my job around 2019.”

After speaking with several different psychologists, Joanna 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.

The condition has continued to get worse over the years, and now Joanne struggles to stay awake for longer than a few hours a day.

The mum tends to feel most alert during the early hours, so is often out walking her cockapoos, Autumn, and Bobby, both six, around 2am.

As well as struggling to stay away, Joanna says she suffered “horrible vivid dreams” when she is fighting to wake-up from a deep sleep.

She currently lives alone but is regularly visited by her two daughters Caitlin Cox, 20, a student nurse, and her youngest Isabelle, 18, a waitress.

The pair pop over to check on their mum and walk the dogs if she hasn’t woken up to take them outside.

“It’s been really tough on my daughters,” she said.

“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.

“I couldn’t have done it without their support.“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.


(Joanna Cox/SWNS)


“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 scalding myself.“Now I just try and deal with it by myself which can be difficult, but I don’t know what else to do.”

Joanna had experienced lots of “embarrassing” moments due to her condition, and now often avoids making plans and meeting people.

She has also been “put off” dating and doesn’t believe she can maintain a relationship due to the disorder.

“Before I was diagnosed, I fell asleep in a booth in a club on a night out,” she continues.

“The bouncer thought I was just drunk and kicked me out – it was so embarrassing.

“I had no idea what was wrong with me and it was so upsetting.

“I’ve been single for seven years now.

“I don’t entertain the thought of having a partner ever again – it doesn’t even cross my mind.

“I can’t imagine being with anyone with this condition.”

Joanna has tried lots of different therapies and medications, but not found anything that helps relieve her symptoms.

She is desperate to find a doctor 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 said.

“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 out to other with the condition, and hopefully, find a doctor who can help.”

SWNS

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