There is little evidence in the literature regarding the incidence of gastroparesis in PWS and how it affects families in the PWS community. Within the Global PWS Registry, 13% of participants have been diagnosed with gastroparesis (N=739). Of those with gastroparesis, more than half were diagnosed under age 10. The severity of gastroparesis reported ranges from once every couple of years, to several times per day. For those struggling with this issue, more than 50% experience symptoms at least once a week or more, prior to any treatment or intervention. However, there are a variety of approaches that can help bring this frequency down.
IRB Approved at the Protocol Level
Jul 29, 2020
Contributed by Mary Burr