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Woman with rare condition shares what it's like to sleep for up to 22 hours a day

Joanna Cox is living with a disorder which causes people to fall asleep repeatedly during the day.

Credit: SWNS

Video transcript

JOANNA COX: My name is Joanna Cox, and two years ago, I was diagnosed with a rare neurological disorder called idiopathic hypersomnia. I have been seen by two sleep specialists now, and I was given a modafinil medication by the last sleep specialist, which doesn't help at all. And having idiopathic hypersomnia, I sleep between 18 to 22 hours every single day, and I also can't sleep for up to four days at a time once a month. Four days is the longest I've slept as of yet. How I'm going to sleep like this.

It's ridiculous. So the most I have ever slept for is four days. When I was woken up by my daughter, she had to call the ambulance because I just wasn't coming around, and the paramedics came out. They gave me glucose because my blood sugars were extremely low. And when I got to hospital, I was then sent home because they said the hospital was no place for somebody with a sleep disorder.

My current sleep specialist who I'm under at the moment at Pontefract Hospital, he is only offering me the modafinil. The modafinil does not help me at all, and he just basically says it's the end of the road for treatment and I am too complex. So I am just hoping by doing this that there is somebody out there that can offer me some sort of help.

So recently, I have been posting on my Tik-Tok page about my disorder, and I am hoping that it reaches all the people with the same disorder that can offer some sort of help, or some sort of advice, or just let me know how they deal with this disorder on a day-to-day basis. I don't know how to deal with it anymore.