World Narcolepsy Day 2021

Raising awareness for World Narcolepsy Day

World Narcolepsy Day is only 11 days away, September 22nd.

Narcolepsy is a Rare Disease that affects 1 in 2,000 In the US or 3 million worldwide! It is a neurological disorder that affects the brain’s ability to control the sleep AND wake cycles, and there is no cure.

Excessive Daytime Sleepiness is the most common symptom, it feels like a wave of exhaustion and although I try to fight against it, it is a battle that I am not able to win. I used to nap whenever and wherever I could, and for as long as I could prior to being diagnosed. I now stick to a 20 minute nap, and due to being medicated, I generally only need to do this once a day.

I used to start my day feeling as if I hadn’t slept for 48 hours, can you imagine your cognitive abilities working under that exhaustion? I went undiagnosed and therefore untreated for 40 years, and eventually my narcolepsy became so debilitating that I was no longer able to get up and go to work. It ruined me financially and cost me a career that I loved!

Please don’t ignore the signs, if you are having sleep issues seek help. The longer you go untreated the worse it gets, and as narcolepsy is not considered a disability in Australia and as such, will preclude many from obtaining support through Centrelink and the NDIS, the ability to support yourself will become extremely difficult as you get older. People with narcolepsy have a significantly increased risk of death or serious injury resulting from motor-vehicle or job-related accidents, and they must take care to avoid situations where such accidents might occur, which adds to the difficulty of finding suitable employment. If not properly diagnosed and treated, narcolepsy can have a devastating impact on the life of the affected individual, causing social, educational, psychological, and financial difficulties. I believe that it is time that our Federal Government looked at the severity of narcolepsy and make the necessary changes for narcolepsy to be a recognised Disability in Australia. What do you think? #raiseawareness #narcolepsy #disability #nocure 

 

Published by Di Spillane

I am a musician who enjoys sharing the stories of other musicians, interviewing them to discuss their musical journey from its early beginnings right through to present day. I research, host, edit, and then release a weekly episode every Saturday morning. My listeners are musicians, music lovers, and people who enjoy listening to real stories about real people. It is a rare opportunity for a musician to discuss their entire journey with an interviewer who allows them to speak uninterrupted. Real people discussing Real stories is what Band It About is all about!

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