Living with narcolepsy, Tara shares her optimism about growing awareness and advances in research: “Narcolepsy and idiopathic hypersomnia are being discussed more frequently, more research is being conducted, and more people are paying attention to the needs of patients living with these conditions.”

Plagued by the side effects of poor sleep, Paul knew he had a problem; his doctor, however, was reluctant to test him for sleep apnea because he did not fit the stereotypical OSA patient profile. It was only Paul’s insistence that led to a home sleep test.

Rachel, who lives with narcolepsy, reflects on the promise of emerging treatments and what they could mean for future generations: “treatment has largely focused on managing symptoms. Hearing researchers and physicians discuss medications designed to replace or mimic orexin felt revolutionary…I have hope for future generations”.

Solomon, an artist living with narcolepsy, uses art to communicate the realities of living with a sleep disorder: “Art can express what sleepiness looks like from the inside out. When the science of the disorder is beyond someone’s comprehension, the art of the lived experience can step in and make them finally feel it.”

Christen has lived several decades of her life with two chronic illnesses, and speaks openly about living with long-term health challenges. Thanks to a supportive family and connection to her community, Christin has been able to find deep purpose and satisfaction in her life.