WHILE most teenagers struggle to get out of bed in a morning, Louisa Ball might take 10 days to fully wake from her slumber, due to a very rare neurological disorder. So what’s it like living with Kleine-Levin Syndrome?
Louisa has slept through holidays, friends’ birthdays and half of her GCSEs.
In 2008, aged 14, she had been suffering from flu-like symptoms. She was at her school in Sussex when she started nodding off in class and behaving strangely.
“I didn’t know what I was doing, what I was saying, everyone thought ‘hey this isn’t right,’” she recalls. “I was hallucinating and after that I don’t remember anything. All of a sudden it just went blank and I just slept for 10 days. I woke up and I was fine again.”
Her parents watched their daughter becoming fidgety and with unusual facial expressions as she sank into sleep. The first time was a frightening experience for them, although Louisa herself says she wasn’t scared by the episode, more puzzled.
“It was really weird, no one knew what was wrong, we just thought it wasn’t going to happen again. And then four weeks later it happened again.”
She was finally diagnosed with Kleine-Levin Syndrome (KLS). There is no known cause or cure but Louisa says it was good to know what it was and that it wasn’t life threatening.
The average time it takes to diagnose the condition is four years, because there is no test and so it requires a process of elimination of other disorders.