Listening to patients: Incidence and distribution of sleep disorders in Prader-Willi syndrome

While the medical community continues to recognize the contributions of disordered sleep to the burden of Prader-Willi syndrome (PWS), the medical literature lacks characterization of the patient burden of sleep disorders by people living with PWS and their caregivers. We developed and fielded a 72-question survey to the online PWS community, to query caregivers about their experiences with sleep symptoms. Respondents for all age groups reported sleep-disordered breathing (40 %), cataplexy-like symptoms (28.4 %), and insomnia (43.5 %). The presentation of cataplexy-like symptoms tended to change as children aged, presenting initially (ages 0–4 years) as head bobbing while eating, then transitioning to knee buckling between the ages of 5–12 years. Finally, loss of generalized tone associated with extreme emotions became more common in the teenage years. Frequent screening for potentially treatable sleep disorders should be considered the standard of care for individuals with PWS.