Raising Narcolepsy Awareness Among School Faculty and Staff

The first time I recall falling asleep in class was in history class in 7th grade.   The teacher was showing part of a documentary and had turned off the lights.  Boring history movie, darkened room….it’s a lovely setup for a nap.  An uncontrollable urge hit, and I put my head down, falling asleep instantly.  I do not know how long I was out before my teacher gently shook me to wake me up.  She looked offended as she embarrassed me in front of the whole class.  I never fully fell asleep in her class again, but there were many times where she would catch me zoning out and would purposefully call on me to answer a question, knowing that I would not know the answer since I was lost in sleepy daydream land.

This little anecdote is not uncommon.  As Narcolepsy Network shares on their website, “Narcolepsy onset typically occurs during the adolescent years. Excessive daytime sleepiness is usually the first symptom to present and will be most pronounced during periods of physical inactivity. Where else but school do you find adolescents and teens inactive for long periods during the day? This makes school the most important place to screen for narcolepsy in order to promote early recognition leading to diagnosis.”

Narcolepsy Network has made it easier for people with narcolepsy to help raise awareness among school faculty and staff by providing a brochure called “Narcolepsy in the Classroom” that can be downloaded and distributed – free of charge.�

Most school districts have directory listings on their websites that include key members – school nurses and counselors especially – including e-mail addresses.

Early in April, I downloaded the brochure and drafted an e-mail explaining my cause and why it’s so important to watch for signs in the classroom. (After all, it is not uncommon for the gap between symptom onset and diagnosis to be 6-10 years!) The “Narcolepsy in the Classroom” brochure was attached to the e-mail.  I sent 20 e-mails that day to nurses and counselors in the nearest three districts.  It took me a total of three hours at the most.

Two days later, I got a response back from one of the school nurses.  She said she had heard of narcolepsy before, but she had never even heard the word “cataplexy.”  It didn’t surprise me; I didn’t know about cataplexy either until last year.  It just heightened my sense of urgency and reaffirmed my efforts.  People don’t know what they don’t know.

People with narcolepsy often want to help raise awareness but don’t know how.  This is an easy way that doesn’t cost any money, and it reaches a very important group of people that can help reduce the gap between symptom onset and diagnosis.

Thank you, Narcolepsy Network, for providing educational materials to help people like me raise awareness!

Do you have ideas on other easy, cheap ways people with narcolepsy can raise awareness? Post your comments below or e-mail me at stridesagainstnarcolepsy@gmail.com!

 

Comments

  1. shekinah419 says:

    Good work, Heather! It’s true, as a nurse I knew next to nothing about it myself and it took a Special Ed teacher asking me, (as the school nurse), if I thought a particular student in her class had narcolepsy, which prompted me to research it and discover that the “spells” I was having along with my history of sleepyness, sounded exactly like cataplexy, (which I also had never heard of0. Long and short it put me on the track to getting properly diangosed, which STILL took 5 years!!! I am glad that you are passionately raising awareness about narcolpsy. You are a great inspiration and role model for others. God bless you!

    • Heather says:

      I think that’s how it goes for most of us; people don’t really know what narcolepsy or cataplexy is unless they or someone they know are directly impacted by it.

      Thanks for the kind words. It’s an honor to help people like you in any way I can!

  2. Marcianna says:

    I have been raising awareness in schools long before these brochure came available. It is so much easier now than trying to find the correct wording on your own. There are some things that are not addressed in the brochures that I hope they do in the future, but they are still a tremendous help!

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  1. […] the same fight.   The positive energy drew me in.  I wanted to do more to help them.  I started using the Narcolepsy Network’s brochures to send to schools.  I organized the Virtual Run/Walk for Narcolepsy after being inspired by a child with […]

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