TREND Community released its latest report on Gastrointestinal Issue in the PWS Community. This report expresses some of the most common topics involving GI issues, including constipation and bowel movements, vomiting/spitting up/gagging, prune juice and other foods, reflux, and community support. This report looked at the conversations to determine different emotions in relation to GI discussions, with fear being the most common emotion in the presence of a GI tract finding. Constipation concerns affected caregivers across the age groups. Caregivers asked a lot of questions regarding management of constipation, showing a prevalent concern and need for information regarding the topic. “Some of the language that separates those fear mentions from the rest of the GI issue discussion suggests the fear relates, in part, to feeding tubes, surgery, sleep studies, and low muscle tone.”
TREND Community
TREND Community is a community-powered digital analytics company that turns the conversations of rare and chronic disease communities into actionable insights. PWSA | USA partnered with TREND Community to help further PWS research through conversations. For two years, TREND collected data from Facebook group conversations to gain important insight into the issues families were facing.
Please note that there was no personal information attached to the data that was collected, but merely the keywords and topics that were being discussed. Some of the data collected by TREND has already fostered and shaped ongoing PWS trials.
Please click the button below to read the report.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.