You or Your Loved One has Narcolepsy: Why is it important to Be Treated?
Produced in collaboration with Project Sleep and NORD
Support for this patient education program was provided by Avadel Pharmaceuticals.
The symptoms of narcolepsy, such as cataplexy and sleep paralysis, can be frightening for patients and loved ones, who may not fully understand what is happening. Vivid dreams, weight gain, mood changes, and daytime sleepiness often have a collective adverse effect on patient quality of life. In addition, with symptom onset typically between ages 10 and 35 years, patients with narcolepsy face lifelong challenges. For management to be successful, patients and their families and caregivers need to take a proactive role in shared decision‐making to set and achieve treatment goals.
Join Emmanuel Mignot, MD, PhD, Craig Reynolds Professor of Sleep Medicine at Stanford University; Julie Flygare, President and CEO of Project Sleep; and patients and caregivers for a free 1-hour educational activity designed to provide strategies to cope with the lifelong journey of narcolepsy.
Watch this program and you will learn:
- Why a prompt and accurate diagnosis of narcolepsy is necessary in reducing burden of disease and improving quality of life in patients with narcolepsy
- The adverse effects that excessive daytime sleepiness (EDS) and interrupted sleep can have on quality of life and overall health
- The potential benefits of shared decision‐making in the management of narcolepsy
- Current medications and those in development
- How to work with HCPs to identify an individualized treatment plan to improve symptoms
Engage with Your Providers to Reduce Time to Diagnosis
Current and Emerging Treatment Options
Practicing Shared Decision Making to Reach Your Desired Goal
Emmanuel Mignot, MD, PhD
Craig Reynolds Professor of Sleep Medicine, Stanford University
Emmanuel Mignot, MD, PhD, is the Craig Reynolds Professor of Sleep Medicine. He discovered that human narcolepsy is caused by the autoimmune loss of ~20,000 hypothalamic neurons secreting the wake-promoting peptide hypocretin. Dr. Mignot identified HLA-DQB1*06:02 and T-Cell receptor genes as major susceptibility genes across ethnic groups, which act together to promote a highly selective T cell mediated autoimmune process triggered by influenza infection. He has received numerous awards and is a member of the National Academies of Sciences and Medicine. Applying lessons learned from narcolepsy immunogenetics, Dr. Mignot has found a protective signal in an immune gene called HLA-DR, specifically the presence of the HLA-DRB1*04 (DR4) subtype in Parkinson’s disease (PD).
President & CEO, Project Sleep
Julie Flygare is a leading ambassador for narcolepsy and sleep, and a strong advocate for patient-centered research and the importance of social support. She is an accomplished speaker, Stanford Medicine X ePatient Scholar, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. As President & CEO of Project Sleep, a 501(c)(3) non-profit organization, Julie leads the organization’s patient-driven advocacy, awareness, education, empowerment, and scholarship programs. She has lectured at numerous professional meetings and education courses, and keynoted conferences in Ireland, Italy, Sweden, Australia, and the United Kingdom. Furthermore, Julie has co-authored papers in peer-reviewed publications and authored a chapter in a narcolepsy clinical textbook.
Interview Participant - Parent, Caregiver
Interview Participant - Patient
Kenya Gradnigo is on a mission to educate others about Narcolepsy with Cataplexy. She is from Opelousas, Louisiana (LA) and is currently residing in Lafayette, LA. Kenya was diagnosed with type 1 narcolepsy with cataplexy when she was nine years old. She was one of the youngest patients to have been diagnosed in the state of Louisiana. In 2015, Kenya received Project Sleep’s Jack and Julie Narcolepsy Scholarship as she began her undergraduate degree at Northwestern State University of Louisiana pursuing her Bachelor’s in Psychology with a concentration in substance abuse. Currently, Kenya is pursuing a Master of Social Work degree at Louisiana College now known as Louisiana Christian University. She is also a member of the Zeta Phi Beta Sorority, Inc.