PWSA Blog

Nurturing and Triggering Roles of Siblings

Sibling relationships with their family member with Prader-Willi syndrome (PWS) are very complex. As one sibling said, “it is a love-hate relationship.” Research shows almost all siblings have an intense love for and an endearing relationship with their sibling with PWS. Many siblings describe their relationship with their sibling with PWS as their most...

September Is Newborn Screening Awareness Month

What is newborn screening? Newborn screening is one of the most successful public health programs ever enacted, saving thousands of lives over the past 50 years. Newborn screening allows physicians to catch rare genetic conditions at birth and start treatment almost immediately following birth; it enables efficient diagnosis and access to treatments that can...

National Childhood Obesity Week

With childhood obesity presenting a significant threat to child health, the American Academy of Pediatrics (AAP) is recognizing National Childhood Obesity Awareness Month during the month of September. Early recognition and treatment of obesity has advantages. As we know in the PWS community, it is a daily struggle for most of our families. The...

Siblings and Communication

Communication is key in any family and is especially important in a family impacted by Prader-Willi syndrome (PWS). Experts believe that open, clear, and frequent communication is necessary for healthy family functioning (Green & Peterson, 2019). Research shows that most parents have sparse conversations with their children about what it is like to grow...

Managing Gastroparesis Related Stress

It is common to feel sad or discouraged when you are trying to manage a chronic condition like gastroparesis. Like Prader-Willi syndrome, gastroparesis is a multi-faceted condition and must be approached from a variety of angles. A combination of medical treatments, complementary therapies, adequate nutrition, proper dietary modifications, a positive attitude, and supportive lifestyle...

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