As individuals with PWS grow up into young adulthood and age into mid-life years, some continue to live with parents or other family, while others reside in group home or supported living situations. Here, we focus on data from the Global PWS Registr...
Jessica Bohonowych
Recent Posts
The Global PWS Registry continues to grow and strengthen as a valuable resource and research tool for the PWS community. The Registry currently has 1,846 participants. Over the past 12 months (July 2020-July 2021), the Registry has grown by over 12% ...
Topics: Research
Individuals with PWS suffer from a variety of digestive and gastrointestinal issues (GI), some of which can lead to surgery. Here, we focus on data from the Global PWS Registry to provide information on the prevalence of gastroparesis (delayed stomac...
Topics: Research, Global PWS Registry
When it comes to hormone imbalances in Prader-Willi syndrome (PWS), growth hormone deficiency and growth hormone therapy are at the forefront of the conversation. However, the levels of several other hormones are also more frequently different in PWS...
Topics: Research, Global PWS Registry
Originally published in August 2020, this blog has been updated with significant new data. The Global PWS Registry launched a survey this summer to capture the impact of COVID-19 on PWS families, and how our community is navigating this unprecedented...
Topics: Research, Global PWS Registry
Although many symptoms of PWS are difficult to treat, impaired vision is a place where corrective lenses and/or surgery can make huge improvements. Data from the Global PWS Registry shows that the most common vision issues in PWS are nearsightedness,...
Topics: Research, Global PWS Registry
For parents of an infant with PWS, one of the first major challenges they face is feeding difficulties and having their baby consume enough nutrition and calories. Data from the Global PWS Registry shows that more than 75% of registry participants re...
Topics: Research, Global PWS Registry
Speech requires a complex combination of cognitive processing to quickly find and combine the right words, paired with the physical process of producing sounds. Since PWS impacts a variety of pathways that contribute to speech and sound development, ...
Topics: Research, Global PWS Registry
Anxiousness is a common challenge for our loved ones with PWS. Within the Global PWS Registry, caregiver-reported anxiety is an issue for 61% of individuals ages 10-14, and rises to almost 75% for individuals 15 and older.
Topics: Research, Global PWS Registry
