Sleep is a common challenge among people with PWS. Whether it is daytime sleepiness, getting up at all hours of the night, early waking, or another sleep related issue, sleep challenges not only affect the individual with PWS but the entire family. The PWS Global Registry has gathered useful survey data on sleep issues in PWS, which is shared in the infographic below.
Sleep Survey Responses
As of December 2017, 287 respondents have completed the sleep survey in the Global PWS registry. Of those respondents, 61% report at least one sleep related issue. The most prevalent challenge is daytime sleepiness (48%), followed by early waking (33%), lack of REM (10%), narcolepsy (5%) and cataplexy (9%).
Sleep Apnea and PWS
The majority of respondents (87%) report that their loved one with PWS has had a sleep study. Of those who have completed a sleep study, 59% have some type of sleep apnea. The most common types of apnea are obstructive (18%), or a combination of obstructive and central (17%). The prevalence of apnea in patients with PWS strongly supports that individuals with PWS should undergo screening by a sleep study.
Be sure to make sure your data is included in future registry highlights by enrolling in the PWS Registry and updating your surveys!
Check out the infographic on sleep issues in PWS below, as well as our infographic on use of growth hormone for PWS.