Three years ago Hobart’s Ella Bird was diagnosed with the rare chronic sleep disorder narcolepsy.
Narcolepsy is a neurological disorder where suffers experience a range of overwhelming daytime drowsiness, sudden attacks of sleep, cataplexy, sleep paralysis and hallucinations.
Four years ago the 18-year-old suffered two bouts of the flu back to back before she was diagnosed with epilepsy. However, a year later doctors discovered it was narcolepsy type one.
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This means she also experiences cataplexy, the sudden loss of muscle tone while awake leading to weakness and a loss of voluntary muscle control. It’s often triggered by sudden, heightened emotions.
September 22 marks World Narcolepsy Day, which is dedicated to raising awareness of the chronic disorder on a global scale.
Ella is thought to be one of only 12 people living with the disorder in Tasmania, however her diagnosis provided some comfort.
“It was good knowing what was actually happening, why it was happening and being able to figure out which medications could actually work,” she said.
“I obviously can do a lot more things now like going to school … well I could always go to school but I would just be falling asleep in class.
“It took a while for teachers to finally like realise what was going on. No one really knows what narcolepsy is and I have to explain it.”
The disorder is treated through a range of drugs but many that are required to treat narcolepsy are not on the Pharmaceutical Benefits Scheme.
One medication is available on the PBS, however Ella had an adverse reaction to it. She finally has found the best treatment for her to manage it, but it carries a price tag of about $400 a month and does not negate all her symptoms.
Her mother, Pamela Bird, said she, along with Narcolepsy Australia and other sufferers, were trying to get more added to the PBS to reduce costs.
“None of Ella’s medication, that she takes at the moment, is on the PBS,” she said.
“There’s other drugs available which are much more expensive than what she’s on but they’re not on the PBS so we’ve kind of been lobbying parliament to try and get a broader scope of things that they might be able to include.”
As part of raising awareness of the disorder, Ms Bird said people should know about the true extent of narcolepsy, as she was unaware before her daughter’s diagnosis.
“I’d seen it in the movies and stuff like that, but certainly the movies are nothing true to life,” she said.
“It’s still a little known rare disease, not everyone you know knows about it or they’ve seen it in movies but it’s not the movies, it’s not funny. It’s actually horrendous.”
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