This Saturday, March 12, marks Narcolepsy Awareness Day, also known as Suddenly Sleepy Saturday. The Narcolepsy Network aims to raise awareness and urges everyone to do their part to advocate for this rare condition.
In fact, the Narcolepsy Network has one specific action item in mind for this year’s Suddenly Sleepy Saturday. They’re asking everyone – whether you’re a patient, caregiver, loved one of an affected individual, or just somebody who wants to help – to send a request to their state governor, asking them to officially recognize this important day. Don’t feel like you have to stop at your state governor, go on to ask your local officials too!
Last year, amazing progress was made, with 25 states making proclamations – 15 of which were granted. This year, the goal is to get all 50 states!
Here’s what to do to make a request to your governor:
- This document will help you find the guidelines for making a proclamation for your specific location
- From there, use this sample letter and cover letter to copy and paste for your own proclamation. Make sure to follow all guidelines for your specific state!
- The last step is to email [email protected] to let them know you submit your request! You can contact them throughout the process with any questions as well.
- The last step – if your proclamation is granted – is to spread the word! Use this template to craft a news release for social media and make sure to tag the Narcolepsy Network.
Hopefully, with the help of all of you, all 50 states will make proclamations this year!
Read more about Suddenly Sleepy Saturday here!
Narcolepsy is a neurological disorder that stops the brain from regulating one’s sleep-wake cycle. It is characterized by instantly falling asleep for a few minutes or longer, depending on the severity of one’s symptoms. Some people experience hallucinations while asleep or directly after waking up. People also often have cataplexy, which is the sudden loss of muscle control, along with narcolepsy, but this is not the case for everybody. When people have both disorders it is known as type one narcolepsy. Cataplexy is triggered by a strong emotion, such as fear or anger, and it manifests as uncontrollable muscle weakness or paralysis. Those who have cataplexy without narcolepsy are often misdiagnosed, as doctors think it is a seizure disorder. Depending on severity, cataplexy can be slight eyelid drooping or the inability to remain standing. One is usually awake during a cataplectic attack but are unable to move. As cataplexy is often related to narcolepsy, people fall asleep after an attack.
The most common cause of an attack is laughter. The destruction of the neurotransmitter hypocretin, which regulates wakefulness, is the root of cataplexy. The cause of narcolepsy type two, which is narcolepsy without cataplexy, is unknown. It is believed that genetics play a part in the disorder, but it is not often passed down from parent to child. Symptoms of type two narcolepsy include sleep paralysis, hallucinations, and changes in rapid eye movement (REM) sleep. In terms of treatment, there are drugs available to treat cataplexy. Xyrem, which was approved in 2002 by the FDA, is used to treat narcolepsy itself, but due to its high potential for abuse it is tightly regulated. Besides drugs, people with narcolepsy often take regularly scheduled naps and do not drink alcohol or caffeine before bed.