All About Me

I came to have narcolepsy when  was about 9. I am 11 years old! For those of you who don't know what narcolepsy is:


Narcolepsy is a chronic neurological disorder that impairs the ability of the central nervous system to regulate sleep. It is the second leading cause of excessive daytime sleepiness 9after obstructive sleep apnea). It is a serious condition requiring medical treatment usually from a sleep disorders specialist. 


People with narcolepsy experience excessive daytime sleepiness, and intermittent, uncontrollable episodes of falling asleep during the daytime. Someone who has narcolepsy is prone to falling alseep while engaged in conversation, driving, eating, or at other inappropriate times. The sleepiness occurs in spite of a full night's sleep and may persist throughout the day. Other narcolepsy symptoms include:


cataplexy - short lived intermittent muscle weakness
hypnagogic hallucinations - hallucinations while falling asleep or waking
sleep paralysis - paralysis while falling asleep or waking
distrubed nocturnal sleep - waking up repeatedly throughout the night
leg jerks, nightmares and restlessness


http://www.orlandosleep.com/disorders-narcolepsy.ht

I have cataplexy, disturbed nocturnal sleep and leg jerks, nightmares, and restlessness.  With cataplexy if I laugh too hard I will experience weak muscles and have to sit down or I will feel I am about to collapse. I have experienced having to wake up a lot during the night. It bothers me and makes it difficult to sleep.

Narcolepsy is a difficult disorder to live with as a kid. We went to 3 doctors to find a doctor that gave me medicine that worked to help me a little. He works at Nemours. I am still struggling with it! Nacrolepsy has other things that are included besides falling asleep during the day. Narcolepsy also slows down your metabolism (which controls how fast your body converts food to energy).

Because of this, I am 137 pounds. If I tell my friends, they say I don't look like it at all. And I am on a diet which is hard for me when I see everyone else eating junky stuff and not gaining any weight. I feel  discouraged everywhere I go when I see skinny people!

I also have to take a nap during my afternoon classes so I can stay awake for my other after school activities. I have to take Florida Virtual School so I can still pass my afternoon classes! If you want to do this, go to http://www.flvs.net/Pages/default.aspx

Did you know that only 50,000 people have been diagnosed with Narcolepsy in the United States?  Please comment if you can relate to this.