Guest Post by Lisa “So I read this thing about how needing to nap is a lot like needing to fart…” When Julie Flygare shared this brilliant and hilarious comparison at the dinner table, an overwhelming urge hit me. It wasn’t a fart, nor was it sleep – it was cataplexy. My body slumped into…
To improve public understanding of narcolepsy, Project Sleep’s Rising Voices of Narcolepsy program trains people with narcolepsy to share their stories through public speaking and writing with local communities, healthcare providers, news outlets, blogs and beyond. Combining the power of real-life stories with expert communication strategies, our Rising Voices of Narcolepsy trained speakers and writers are effectively raising awareness and reducing stigma for all those facing narcolepsy.
Narcolepsy is a chronic neurological disorder of the sleep-wake cycle that affects about three million people worldwide. However, public understanding of narcolepsy is limited, with media portrayals associating narcolepsy with comical sleepiness rather than a medical condition. As a result, people with narcolepsy often face stigma and isolation. Likewise, misconceptions and low awareness perpetuate delays in proper detection and diagnosis.
At the same time, communicating about narcolepsy can be challenging. Many aspects of living with narcolepsy are invisible to peers, family, teachers and even medical professionals.
Rising Voices of Narcolepsy serves the dual purpose of fostering a new generation of narcolepsy patient-advocates spreading narcolepsy awareness while also empowering participants. Personal stories of health and illness are invaluable public education tools. Audiences are much more likely to empathize and retain information when it is delivered by someone with lived experience, giving a real “face” to medical terminology and statistics. Moreover, for those with “invisible illnesses” like narcolepsy, sharing one’s story is a powerful way to find connection, validation and understanding.
Project Sleep will host our third RVN training courses during the summer of 2019. The application period is now closed and we can no longer accept applicants for this summer’s trainings.