Tammy Anderson, Executive Director, and Jenny Rose, Manager of Outreach and Management at Wake Up Narcolepsy, discuss the challenges of diagnosing narcolepsy and the profound impact the disorder can have on patients and their families. Both Ms. Anderson and Ms. Rose are parents of children with narcolepsy.
Narcolepsy is a chronic neurological disorder characterized by an inability of the brain to control sleep-wake cycles. Patients with narcolepsy typically may enter REM sleep more quickly, causing the boundaries between wakefulness and sleep to blur. This causes fragmented sleep at night as well as muscle weakness and dream activity while awake. Common symptoms include excessive daytime sleepiness, cataplexy, sleep paralysis, and hallucinations.
Narcolepsy can be difficult to diagnose, often due to a difference in language used to describe symptoms between patients and physicians. Additionally, symptoms and coping mechanisms of narcolepsy can mimic other conditions such as ADHD, anxiety, depression, and other mental health diagnoses.
According to both Ms. Anderson and Ms. Rose, who are both parents to children with narcolepsy, every aspect of daily life is affected by the disorder. While symptoms, routines, and treatment vary greatly from person to person and day to day, the burden is profound. Narcolepsy can impact a patient’s mental, emotional, and physical health, make it hard to work, do school, extracurriculars and sports, drive, maintain relationships, etc.
Fortunately, the past few years have been an exciting time for the narcolepsy treatment landscape as more is understood about the disease. In August 2026, the first therapy designed to target the underlying cause of disease, Orzeyful (oveporexton), was approved by the US Food and Drug Administration (FDA) for adults with narcolepsy type 1. Ms. Anderson explains the excitement families are feeling following this approval knowing that the approval gives patients another treatment option.
Wake Up Narcolepsy is a nonprofit organization dedicated to supporting community members through education, awareness, support services, and research funds. Through their initiatives, the group hopes to raise awareness and educate patients on communicating with physicians, improve access and affordability of treatments, and support patients and families through support groups and conferences.
September is Narcolepsy Awareness Month.
To learn more about narcolepsy and other rare neurological conditions, visit https://checkrare.com/diseases/neurology-nervous-system-diseases/
Tags: neurology, advocacy, diagnosis, treatment