By: Gerald Giebink –
Thanks to local efforts, the Governor of Montana has recognized March 7th, 2015 as Narcolepsy Awareness Day, or “Suddenly Sleepy Saturday”.
Narcolepsy is an immunodeficiency disorder that causes a deregulation of sleep cycles. It is caused by a hypocretin deficiency in the brain, and is incurable. Symptoms include excessive daytime sleepiness, cataplexy (an involuntary loss of muscle control), temporary paralysis, and disrupted nocturnal sleep. These symptoms have far-reaching impacts on the lives of narcoleptics.
While the disease is not uncommon, it is underdiagnosed and often misunderstood. Stanford University’s Center for Narcolepsy estimates that 1 in 2000 Americans have narcolepsy. However, very few Americans know what the disease is, let alone its effects on diagnosed individuals. According to the Center for Narcolepsy, the average time between the onset of symptoms and the correct diagnoses of the disorder is 14 years.
Narcolepsy Awareness Day began with the Narcolepsy Network, a nationwide nonprofit dedicated to supporting people with narcolepsy, raising awareness about this serious neurological sleeping disorder, and promoting research for treatment and a cure for the disease. They continue to organize and assist those seeking those seeking to have Suddenly Sleepy Saturday recognized by their state. The Network collaborated with me, and without their assistance, I would not have been able to make Narcolepsy Awareness Day happen in Montana.
Suddenly Sleepy Saturday occurs every year in March, the day before Daylight Savings Time begins. This is because that day, everyone loses an hour of sleep, and gets a tiny taste of what it is like to have narcolepsy.
As a person with narcolepsy, I feel that it is important to raise awareness for a disorder that is misunderstood and often unnoticed by the public. I was diagnosed with narcolepsy at the age of 11, which is extremely early, and experience all of the symptoms listed above. It hasn’t been easy for me, and I know that rings true for many people with narcolepsy. I petitioned the Governor of Montana to recognize Narcolepsy Awareness Day because I believe that early diagnoses and better treatments can help narcoleptics across America.
I would like to thank Governor Steve Bullock, the Narcolepsy Network, and all of the people who support me for helping make this happen. For more information about narcolepsy, visit www.narcolepsynetwork.org, or feel free to ask me.