At age 20, Christina received a diagnosis of narcolepsy, putting a name to the collection of symptoms that had challenged her daily life for years. Christina, then a college student and scientist-in-training, put her research skills to work and discovered all she could about the disease. Unfortunately, cures for narcolepsy existed neither then nor now, and the more Christina read about narcolepsy, the more questions she found unanswered. Despite many hypotheses on the cause, little is still known about the mechanisms of this disease. Symptoms of narcolepsy, such as excessive daytime sleepiness, disrupted nighttime sleep, and hallucinations, are often associated with psychiatric disorders or emotional problems, which leads to an average time of seven years to achieve an accurate diagnosis.¹ These gaps in the understanding and treatment of narcolepsy helped guide Christina into the world of patient advocacy.

Shortly after her diagnosis, Christina�s physician recommended that she participate in the Narcolepsy Network �, a patient-centered, non-profit advocacy organization for People with Narcolepsy (PWN). Her experiences with the Narcolepsy Network � are many, including presentations at patient conferences, writing articles for Narcolepsy News, developing social media support groups, and meeting lifelong friends. One of these friends participated as a consumer reviewer for the Peer Reviewed Medical Research Program (PRMRP), which has addressed sleep disorders since Fiscal Year 2015 (FY15). Following her friend�s recommendation, Christina applied to participate as a consumer reviewer and shared her lived experiences during FY19 and FY21 peer review of PRMRP applications. While Christina recognized the commitment of the scientific community to understanding sleep disorders, herself included, she greatly appreciated how the peer review process allows consumers to share their experiences to help identify research most likely to impact patients� lives. �The perspectives and lived experiences of consumer reviewers are taken very seriously and it�s very gratifying to know that our participation counts and is appreciated by everyone involved in the peer review process,� Christina said.

Christina continues to participate in the Narcolepsy Network �, drawing inspiration from a community of PWN sharing their challenges and celebrating victories living with their disease. She manages her symptoms through a combination of medication, diet, and a coordinated schedule for daily routines. In fact, the low-carb ketogenic diet she follows served as a catalyst for many of her roles in the Narcolepsy Network �, where she shares her experiences with diets for narcolepsy symptom management.

Still, narcolepsy affects nearly every decision that Christina makes, from where she lives to the activities she can sustain. She even lives within biking distance of the facility where she works, as her disease can render driving unsafe. Christina is currently a postdoctoral research fellow. Influenced by her own experiences with narcolepsy, she looks forward to starting her career as an independent investigator to address important questions in the field of neuroimmunology.

References:

¹ Narcolepsy Fast Facts. Narcolepsy Network �. https://narcolepsynetwork.org/about-narcolepsy/narcolepsy-fast-facts/.

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of Defense or Department of the Army position, policy, or decision.