Go here to read Part 1 and Part 2 of this series provided by TREND Community about Prader-Willi Syndrome.
TREND Community released a revealing report in November 2024 titled “Pulse Report: PWS and Pain,” exploring the overlooked and complex experience of pain in people living with Prader-Willi Syndrome. Drawing from community-sourced data, the report highlights a critical gap in understanding and managing pain for those with PWS—a rare genetic disorder that affects approximately one in 15,000 births.
Prader-Willi Syndrome is commonly associated with symptoms such as low muscle tone, intellectual disability, behavioral challenges, and, most notably, chronic hunger (hyperphagia). However, the experience of pain—its prevalence, types, and impact—has received far less attention from researchers and clinicians. The TREND Community’s new report seeks to change that by amplifying the voices of patients and caregivers.
The “Pain Pulse” report is built on input from caregivers, people living with PWS, and advocates. Through surveys and community conversations, the report surfaces both quantitative data and personal stories, painting a vivid picture of how pain can affect everyday life. One of the most important findings is that pain in PWS often goes unrecognized, underreported, or misunderstood. Many individuals with PWS have difficulty communicating about their pain, leading caregivers and medical professionals to miss early signs of discomfort or illness.
Caregivers report that pain in PWS can present in atypical ways, such as changes in mood, sleep, or behavior, rather than clear complaints of pain. This can make it harder to diagnose underlying issues, such as gastrointestinal problems, injuries, or other medical conditions. The report stresses the need for greater awareness among healthcare providers about these unique pain signals and the importance of proactive observation.
The report also details the emotional toll on families who must constantly interpret nonverbal cues and advocate for their loved ones in medical settings. Many caregivers express frustration at the lack of guidance and support when it comes to pain assessment and management. They call for more research and education to help clinicians recognize pain in PWS and respond effectively.
Despite these challenges, the “Pain Pulse” report also captures the resilience of the PWS community. Families share strategies for monitoring and managing pain, from keeping detailed health logs to developing close relationships with trusted healthcare providers. The report features direct quotes and stories from caregivers, further illustrating the realities behind the statistics.
TREND Community hopes that this report will catalyze more attention to pain in PWS—both in research and in clinical care. By shining a spotlight on this hidden aspect of the disorder, the community aims to improve quality of life for people with PWS and their families.
