Narcoleptic symptoms often begin in childhood or adolescence and can greatly disrupt every element of a child’s educational experience, including academics, social development, and athletics.
Given this, Monica Gow—who co-founded Wake Up Narcolepsy (WUN) in 2008—felt a need to design a program specifically to bring awareness of the condition to the educational environment. Dubbed “Narcolepsy Goes to School (NGS),” the program aims to speed narcolepsy diagnosis and treatment by raising awareness among a high-risk, high-reward constituency.
“We frequently hear about insensitive if not abusive treatment of students with narcolepsy by peers and even teachers, indicating a vast gap in understanding the disease and empathy for narcoleptic students,” says Gow, whose son began showing symptoms of narcolepsy at age 10.
“The disorder is poorly recognized and seriously underdiagnosed,” continues Gow, who serves as executive director of WUN. “Educators, who spend extended periods of time with students, are often among the first people outside of the student’s home to observe symptoms that may point to narcolepsy, but they can help these students only when they know the telltale symptoms.”
Normally, excessive daytime sleepiness (EDS) presents itself most often when the student is inactive and is expected to concentrate, such as in class. “Teachers need to understand that sleepy students are probably just that, but the behavior could be a sign of a serious sleep disorder like narcolepsy,” she says.
WUN offers on-site NGS workshops for teachers, school nurses, guidance counselors, coaches, and other educators. “We help school personnel recognize possible symptoms of narcolepsy,” Gow says. “Then we work with the family to refer the student to a doctor, as only a specific medical test can make a proper diagnosis. We also offer recommendations for in-school accommodations that can be made to help the diagnosed student.”
NGS also provides narcolepsy literature, and makes WUN staff available for helping educators address specific situations. All services and information are provided at no cost.
Specifically, the program asks school staff to help students with narcolepsy by practicing the “3 Rs of narcolepsy”:
- Recognize the symptoms of narcolepsy.
- Respect that narcolepsy is a lifelong, serious sleep disorder that needs treatment.
- Refer students who exhibit symptoms for a full medical diagnosis.
Often narcolepsy has a stigmatizing effect on students living with the disorder. “Teachers who know how to respond to EDS and cataplexy influence how fellow students and school staff respond to students with narcolepsy,” Gow says. “Educators who respond to narcolepsy with calm and support will influence others to do the same. Respecting and encouraging students with narcolepsy inspires learning, maturity, and self-confidence.
“By expanding the understanding of narcolepsy among members of the school staff, our NGS program addresses the number one hurdle for speeding diagnosis and treatment—awareness,” Gow concludes.