Beth Goodier, 20, from Stockport suffers from the Kleine-Levin Syndrome, also known as the 'Sleeping Beauty' syndrome, often sleeping up to 22 hours every night.
Goodier's neurological disorder started when she was only 16 and kicks in every five weeks, at which point she requires 24-hour care and can sleep anywhere between one to three weeks.
When an episode strikes, the sufferer can feel irritable, disorientated and want to eat excessive amounts of food, reported the Daily Mail.
Appearing on BBC Breakfast on 20 October, Goodier expressed her frustration saying:
"I spend half of my life in bed. The onset for most people is adolescence, when you are at college, university, getting a job, finding out who you are. It [Kleine-Levin Syndrome] takes all that away from you at a crucial time. My life is on hold. I only remember snippets of an episode, so it's like half of my life disappears."
Goodier appeared on the show accompanied by her mother Janine who added, "When she's up, all she does really is, she's either in bed or on the sofa and she'll watch telly, often the same things over and over again as she likes predictability."
When Goodier is not asleep, she is still pretty much in a dazed state, confused and unable to tell the difference between the reality and dreams.
Between episodes, most people express being depressed as a result of the condition.
Goodier has been unable to move out of her parents' home or attend university due to the lingering condition. Her mother has been unable to continue working as she takes care of her daughter who is in a child-like state when awake and requires supervision.
Janine says the family tries to spend quality time with Goodier when she is awake.
"On the odd time she's well we don't say any more, 'We'll do that next week'. We do it now when she's well because that might be the only time you get," said Janine.
An estimated 1,000 people suffer from the rare disorder worldwide with 70% of the victims being men.
It is still unclear what triggers the condition and a cure is yet to be found.
The woman with 'sleeping beauty syndrome' which means she is only awake for TWO hours a day : Beth Goodier, 20... http://t.co/hzbsOPRwo4
— Thoughtful (@OganBelema) October 20, 2014
The disease often strikes during adolescence and tends to start after an infection or illness.
Doctors predict the condition usually wears out after 10-15 years.
"I want to be able to do something productive in the time when I'm well. I want to be productive for society. There are Facebook groups, which have really helped," said Goodier on BBC Inside Out.