A mum with a rare condition was taken to hospital after sleeping for four days without waking up.
Joanna Cox, 38, has a disorder which means she can sleep for up to 22 hours each day. The mum-of-two was diagnosed with idiopathic hypersomnia after years of excessive sleeping and struggling to stay awake during the day.
Before she was given a diagnosis, Joanna found herself falling asleep in unusual places such as a nightclub and even behind the wheel of a car.
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The rare condition leaves sufferers with extreme daytime sleepiness, often resulting in 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.
Joanna 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.
One incident saw Joanna rushed to 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 the symptoms.
Joanna, who is currently unemployed, from West Yorkshire, said: “It’s honestly ruining my life. 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. Over the next few years, she went back and forth to the GP try and get to bottom of her fatigue.
She was then tested for a number of illnesses and disorders, but "no one could diagnose me and it all the while I was getting worse."
After being monitored overnight at a sleep clinic in October 2021, Joanna was 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.
She said she tends to feel most alert during the early hours, so is often out walking her cockapoos, Autumn, and Bobby, both six, around 2am. Joanna currently lives alone but is regularly visited by her two daughters Caitlin Cox, 20, a student nurse, and her youngest Isabelle, 18, a waitress.
Joanna is desperate to find a doctor who can help her live a more normal life. She said: "It’s really upsetting when people just say I’m ‘lazy’ or need to set more alarms. 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.”
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