CENTRE COUNTY, Pa. (WTAJ) – Sept. 22 is dedicated to World Narcolepsy Day, with sleep specialists around the world hoping to drive awareness for the commonly overlooked neurological disorder.
Despite getting a full night’s rest of sleep, people with this condition tend to feel extremely sleepy during the day.
“Sleepiness is not normal. If you are sleepy you need an evaluation not necessarily just for narcolepsy to see whether or not you’re experiencing insufficient sleep, poor-quality sleep or do you actually have a central disorder of hypersomnolence,” said child neurologist Dr. Anne Marie Morse.
In addition to excessive daytime sleepiness, Morse says other things people with narcolepsy might experience are sleep paralysis, hallucinations and fragmentation.
According to Morse only 1 in 2000 are impacted by narcolepsy, but she says there’s about 50% of patients walking around undiagnosed.
“The average person with narcolepsy sees 3 – 5 providers and many times is also experiencing 3 – 5 misdiagnoses before appropriately being diagnosed with narcolepsy,” said Morse.
A common misconception Morse says that swells around the condition, is that it’s an adult disease, but really she says it’s a pediatric onset disease, with the majority of individuals with narcolepsy being between the ages of 5 and 15.
“In fact it has a bimodal distribution meaning that there’s two peaks of time of onset for this condition. And the first peak is actually at the age of 15, with the second being at the age of 37,” said Morse.
The good news Morse says is that there are an explosion of new treatments for it in the pipeline.y
As for the current treatments, she says they’re packaged into treatments for exessive daytime sleepiness and cataplexy.
“Our first line of therapies are our alerting agents meaning that they’re medications that were specifically developed to help maintain wakefulness or oxybate agents which is a nighttime medication that is really to help both the excessive daytime sleepiness as well as cataplexy,” said Morse.
Other therapies she says include traditional stimulants like drugs they’d use for ADHD.
To help continue educating and improving the surveillance of narcolepsy, Morse has been able to help develop a new program called “Wake Up And Learn” through the generous gifts of Jazz Pharmaceuticals and the Janet Weis Children’s Hospital.
‘We’ve been able to go into the community through this school based sleep education and surveillance program which we piloted last year in Montgomery School District and had phenomenal results. We really were able to move the metrics of being able to identify how prevalent are sleep disorders in our children and adolescents and what can we do differently in that,” said Morse.
Morse says her hope is that they’re able to make narcolepsy a conversation that is much more common.
“I think we live in a society that very much wears sleep deprivation and sleepiness as a badge of honor, of how much can we get done with getting away with less sleep or still feeling like we’re dragging, and really I think it’s an opportunity to reformat what the conversation is and look at sleep as what it really is which is a biomarker of health,” said Morse.
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