People often say they want to sleep for weeks, especially after a big weekend or a busy week at work but for Harry Dunn, sleeping for weeks is a reality.
Harry, who is from Rudall, suffers from Kleine-Levin Syndrome, also known as Sleeping Beauty Syndrome, a rare sleep disorder affecting one in a million people, which is characterised by “persistent episodic hypersomnia” or persistent episodes of excessive sleepiness, and cognitive or mood changes.
It started when he was in year 9 while he was boarding at Prince Alfred College, however doctors initially diagnosed him with glandular fever.
After it reoccurred, his parents took him to see a specialist but they still could not work out what was wrong.
It was not until a neighbour saw something on Sleeping Beauty Syndrome and told his mum, Mignon, who went and researched it, that they realised it matched his symptoms.
The syndrome is so rare the doctors had to research the syndrome as well.
Harry, 18, said he “basically turns into a zombie” for a couple of weeks, not remembering anything that happens.
During his episodes, his family has to make sure he eats and showers.
He recently woke up from his longest episode lasting 41 days.
“I hadn’t had an episode in 12 months when this one started, the gaps between episodes are getting longer but so are the episodes,” Harry said.
“I wake up happy with a massive smile on my face and on my parents’ but after this episode I needed two days to come good.
“I don’t normally remember anything when I wake up but my mum or sisters would remind me of something and then I can remember.”
However, he said the syndrome did not affect his life too much.
“This year, I missed out on playing in my football grand final but my boss is okay, he knows about the syndrome so I still have my job.
“My social life doesn’t get affected too much, I might miss a friend’s birthday or something but nothing major.
“It was the same in school, in year 12, I only had one episode that lasted three weeks but two of those were school holidays.”
Harry has been through numerous tests, including CAT scans, MRIs and sleep studies but there is no known cause or cure of the syndrome.
Lithium has been found to decrease the duration of episodes but only in 20 to 40 per cent of cases.
However, Mr Dunn said he would not go into any clinical trials.
“It doesn’t really affect my life too much, so I wouldn’t really worry about any trials that come around,” he said.
Sleeping Beauty Syndrome usually lasts for about a decade and generally affects teenage males.
As far as Harry is aware, there is one girl in Adelaide who also suffers from Sleeping Beauty Syndrome, who he has connected with.