Narcolepsy Nerd Alert: Living with Idiopathic Hypersomnia

Idiopathic hypersomnia (IH) is a chronic, neurological sleep disorder causing excessive daytime sleepiness despite getting normal or longer amounts of sleep, but the exact cause is not known. In celebration of IH Day (June 7, 2025), Project Sleep hosted a special Narcolepsy Nerd Alert broadcast shedding light on this rare condition, which shares similarities with narcolepsy but is less well-known.

Special guests Dr. Lynn Marie Trotti, MD, Claire Wylds-Wright, CEO of the Hypersomnia Foundation, and Rising Voices speaker Taylor Jackson shared clinical, advocacy, and patient insights on living with idiopathic hypersomnia.

Watch Living with Idiopathic Hypersomnia Now

Guests: Living with Idiopathic Hypersomnia

Dr. Lynn Marie Trotti is an Associate Professor of Neurology at Emory University, where she also serves as the Associate Program Director for the sleep medicine fellowship. Clinically, her practice is focused on treatment-refractory hypersomnolence disorders and the multidisciplinary care of people with Parkinson’s disease. Her research focuses on the pathophysiology and treatment of the central disorders of hypersomnolence.

Claire Wylds-Wright is an award-winning author and advocate for children with narcolepsy. Her book Waking Mathilda—A Memoir of Childhood Narcolepsy charts her family’s journey from the UK to the USA in search of life changing treatment in an attempt to rescue their youngest child Mathilda, who developed narcolepsy following the 2010 H1N1 vaccine. Claire is CEO of the Hypersomnia Foundation and the co-founder and CXO of Sleep Consortium—a nonprofit organization dedicated to accelerating research in central disorders of hypersomnolence and related diseases. 

Taylor Jackson is a crafter, animal lover, and recent graduate of Harvard University. She was diagnosed with idiopathic hypersomnia (IH) during her sophomore year of college and hopes to educate physicians and scientists on the realities of living with the condition. As a speaker with Project Sleep’s Rising Voices program, she shares her story to provide an honest look into the challenges faced during her IH onset and raise awareness about varying presentations of sleep disorders. 

Learn more about idiopathic hypersomnia and IH Day: https://www.hypersomniafoundation.org/