Teen seeks help for sleep disorder in US
THE family of an Ipswich teen suffering from a rare sleeping disorder is hopeful of finding better treatment from a US specialist this week.
Luke Jose, 15, was diagnosed with narcolepsy last year, a neurological disorder affecting the control of sleep.
Without medication, Luke would sleep for 20 hours a day.
The disorder is so rare it affects less than 1% of Australians.
The Joses will visit Stanford University for further tests and approval from doctors for Luke to benefit from Xyrem, a drug not available in Australia.
Luke first experienced symptoms two years ago, when he constantly fell asleep in class.
After some initial success with treatment, they enlisted the help of an expert at Stanford University for approval of a drug not available in Australia without government approval.
Luke, a straight A maths student, said his teachers thought he was not getting enough sleep at home after he started to nod off in class.
"The teachers sent me to the detention room, but they said they were so sorry after I was diagnosed," he said.
His mum Michelle said the medication was initially effective.
"Initially yes, but over a short period of time his body got used to it and it wasn't as effective," she said.
They hope Xyrem will better improve Luke's condition.
"It will give him more energy. It improves their sleep at night time which in return improves their alertness during the day.
"What we are hoping to get, is that Luke would be an eligible candidate so we can say to our government it will work for him and we would like an exemption."
The condition is caused when the body's sleep regulator skips the first three stages of sleeping.
When narcolepsy sufferers fall asleep they begin in the dreaming stage of sleep, known as REM, which normal sleepers hit after a solid eight hours.
It results in 10 minutes of sleep, Mrs Jose said.
"When they wake up the next day they are tired. It's a struggle to keep them awake during the day."
Narcolepsy
- Symptoms include day time sleepiness, loss of muscle tone, vivid dreams, hallucinations and sleep paralysis.
- There is no cure for narcolepsy.
- For more information go to narcolepsysupportaustralia.com
