• Shannon Jeffords Burkoth

Gone, vanished, disappeared!!!

So what causes narcolepsy anyways and what is it really? Those are two very interesting questions indeed! Questions that I would never would have known had I not been diagnosed with it myself. You see, narcolepsy is not at all as it appears in the movies or on television, in fact, it is not very funny, but it IS very intriguing! The very reason I started this blog was to help raise awareness and advocate for people with narcolepsy, knowledge is power. Knowledge leads to quicker diagnosis's which lead to earlier intervention, which hopefully lead to a better, more manageable life for those afflicted.

Narcolepsy in essence is the depletion of the brain chemical called hypocretin or orexin, which is stored in the hypothalmus in the brain. So where nearly 100,000 cells once were, are no longer or are very scarce. This makes narcolepsy much more than a sleep disorder, it is indeed a neurological one! How does this sudden loss of brain cells happen? We don't know yet! Can it be replaced? Nope. Much more research needs to be done, but very little funding is available because it falls under the catagory of a rare disease, which there are are at least 7000 that we know of. These hypocretin cells are responsible for regulating your sleep cycle, maintaining sleep and wake states at appropriate times. Without these cells, our sleep and wake states are erratic, unpredictable and debilitating! Take a look at the infographic at the end of this article, it is a great depiction of the difference on sleep distribution in a person with narcolepsy.

There is a genetic marker for narcolepsy that is carried by approximately 25% of the population, but that does not mean that you will develop it. It is thought that the gene can be triggered by a traumatic event or illness as well. It is also thought to be autoimmune in nature. Narcolepsy most often appears between the ages of 10-25 and the average time it takes to receive a proper diagnosis is 7 years! Seven years, that means a teenager that goes undiagnosed can can be severely affected in the coarse of their education if they do not receive treatment and accomodations to help them reach their most potential! I heavily advocate for narcolepsy on my social media accounts for this very reason.

There is no cure for narcolepsy and only one FDA approved drug specifically for narcolepsy. The symptoms experienced due to the lack of proper sleep are staggering. Medical journals compare having narcolepsy to an average person going without sleep for 48-72 hours! Think about that...how well would you function under these circumstances? The main symptoms are excessive daytime sleepiness (including sleep attacks), hallucinations, sleep paralysis, and cataplexy (sudden loss of muscle tone). Other symptoms experienced may include memory loss, brain fog, loss of concentration, micro sleeps, automatic behaviors, problems with word recall, easily frustrated, easily irritated, moody, withdrawn, clumsy, poor coordination...you get the picture!

I am a person with narcolepsy and cataplexy, I am not a medical professional.

Thank you for reading my blog! More information is available on my website including resources for teachers.

#Narcolepsy #Hypocretin #Orexin #ShannontheNarcoleptic #SleepDisorder #cataplexy #Advocacy #RareDisease #CareforRare

80 views0 comments

Recent Posts

See All

© 2023 by DO IT YOURSELF. Proudly created with Wix.com