You may not be aware of it, but today was World Narcolepsy Day.
Globally, the rare neurological disorder is estimated to afflict up to 1 in 2000 individuals[1] and is characterised by excessive daytime sleepiness and cataplexy—a sudden loss of muscle tone triggered by positive emotions.
It’s a genuine tragedy that a disorder so destructive to a person’s QOL can be induced the moment that they experience any form of happiness.
Unfortunately, despite it being over a century since it’s identification, there remains no cure for narcolepsy.
The term “narcolepsy” (literally “seized by somnolence”) was coined by French physician and neuropsychiatrist, Jean-Baptiste-Édouard Gélineau in 1880, at a time when many health professionals viewed the syndrome as a form of epilepsy.
Others viewed narcolepsy in Freudian terms as a hysterical defense mechanism, perhaps because the Gélineau’s German contemporary, Carl Friedrich Otto Westphal's, index case was a rapist who suffered from pathological sleepiness.
By the turn of the at the turn of the 20th century, narcolepsy remained as misunderstood as the treatments being used to treat it.
Anti-epileptic potassium bromide, vasodilators picrotoxin and amyl nitrate vapors, agents aimed to improve motor abnormalities such apomorphine and strychnine, and, lastly, hydrotherapy, electricity and cauterisation of the nape of the neck were all as ineffective as they were bizarre.
It wasn’t until 1935, when amphetamine was found to be more effective at controlling sleepiness, that any success was achieved.
Amphetamines are still prescribed as a stimulant to counter the symptoms of the disorder
This is significant, because although more advances have been made since, current treatments for narcolepsy are still based on the same principles of symptomatic management of sleepiness and cataplexy.
At least half of all narcolepsy patients are consigned to taking medication for the rest of their lives.
But medicating narcolepsy is still a long way from curing it.
With the benefits of modern treatments, an estimated 80% of patients can get back to near-normal functioning, but they still need to make considerable behavioural and life-style modifications to accommodate scheduled bedtimes and napping - either as long naps in the afternoon or several brief naps distributed throughout the day.
In this day and age, narcolepsy still significantly impacts everyday life, and can have a devastating impact on the affected individual and their loved ones, often causing social, educational, psychological, and financial difficulties.
People with narcolepsy also have a significantly increased risk of death or serious injury resulting from motor-vehicle or job-related accidents.
In Australia, it is vital that we have a #strongerPBS and are set up to ensure affordability and provide access to new and innovative therapies and treatments as they emerge.
If you’re working in the CNS or sleep disorder space and looking to navigate the Australian market better, Asteri are committed to your cause. We encourage you to get in touch.
REFERENCES: [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5114175/
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