When you look at me you can’t see it. You see a student who gets tired and sleepy if the lights gets dimmed, puts his head on the desk if the lecture is slow or quiet, and nods off from time to time. No, I did not stay up too late last night. In fact, I take a nap or two after school; I go to bed at 10:00 pm every weeknight and wake up four times a night to take medicine to put me back to sleep.
I have narcolepsy with cataplexy, an invisible neurological disorder in which my sleep wake cycles are really mixed up because my brain doesn’t produce enough of the neurotransmitter called hypocretin. You will see my cataplexy, a sudden loss of muscle tone, when I experience extreme emotions like laughter, anger, and fear. Unlike some of my friends who fall to the ground, my symptom appears as facial muscle drooping and weakening of the knees. These attacks last just a few seconds.
It took my doctors four years to diagnose my condition, better than the national average of seven years, but that is still a long time. Many of my friends with narcolepsy were diagnosed as schizophrenic, depressed, ADHD, epileptic to name a few. The symptoms of narcolepsy mimic these diseases (hallucinations, withdrawn, fidgeting to stay awake, and cataplexic episodes).
Luckily for me, I did get the correct diagnosis and with medications I lead a very active and fulfilling life of a high school junior. I have narcolepsy but narcolepsy does not have me.
Lukas Hunter is Youth Ambassador for the Narcolepsy Network. He has available to give a slide presentation or table top display concerning narcolepsy in youths with a focus on school participation and accommodations necessary for the student with narcolepsy to reach his/her highest potential. Please contact Mary Hunter at firstname.lastname@example.org for more information on this program.