Prader-Willi Syndrome (PWS) is a genetic condition that causes a constant feeling of hunger, leading to overeating and often obesity. According to the National Prader-Willi Syndrome Association, approximately 1 in 12,000 people are diagnosed with PWS. While it is a rare disorder, PWS is one of the most common conditions seen in genetic clinics, making it a focal point for understanding genetic causes of obesity.
Prader-Willi Syndrome can sometimes develop if there is damage to the hypothalamus, the part of the brain responsible for regulating hunger. This condition can significantly affect a person’s life, but with the right care and support many people with PWS can thrive and lead fulfilling lives.
Group Homes and Support Systems for Individuals with PWS
In Stanly County, North Carolina, two group homes serve individuals with PWS, helping them navigate the challenges of the condition. Circle Drive was the first PWS-specific group home in North Carolina, opening in 1995. A second home, Lafayette Home, was established with the help of a HUD grant in 2000. These homes provide essential structure and supervision, ensuring residents maintain strict nutritional guidelines to avoid excessive eating and potential obesity.
For people like Chris Bauer and Tracy Roberts, these homes are more than just places to live. They are environments that foster personal growth, independence, and the opportunity to contribute to the community.
Pictured: Chris Bauer and Tracy Roberts share their successes of living with Prader-Willi Syndrome and volunteering within their community.
Volunteering and Overcoming PWS Challenges
Both Bauer and Roberts live at Circle Drive and attend the Stanly Industrial Services (SIS) day program. Despite the challenges that PWS may pose, the two are determined to volunteer and give back to their community.
Bauer, 40, has been volunteering for several years at the Stanly Community Christian Ministry food pantry, where he stocks shelves, helps distribute bread and desserts and assists families. He finds joy in these tasks, especially interacting with the families who benefit from the pantry’s services. Bauer looks forward to his volunteer shifts and enjoys assisting in any way possible.
Roberts, 53, has been involved with Meals on Wheels, delivering meals to seniors in her community. She values the connections she makes with the elderly recipients, many of whom do not have anyone to talk to. She also volunteers at OASIS of Stanly County, a service agency for senior citizens, answering phones and helping with various tasks.
Both individuals have proven that despite the challenges posed by PWS, it is possible to lead an active and fulfilling life. Tracy Roberts has also worked hard to lose almost 300 pounds over the past 16 years by carefully monitoring her nutrition and staying active at the YMCA.
The Importance of Community Support and Care
The success of Bauer and Roberts highlights the importance of community support for individuals with PWS. A SIS Support Coordinator emphasizes that becoming part of the community is a crucial step for those with PWS. The support of care teams and adherence to strict nutritional guidelines play a critical role in their success.
This spirit of giving back is integral to both Bauer and Roberts, showing that with the right support, individuals with PWS can not only overcome obstacles but also make meaningful contributions to society.
At Monarch, we believe in empowering individuals to live fulfilling, independent lives. If you or someone you know is struggling with PWS or another developmental disability, we encourage you to learn more about our support services. Together, we can help individuals like Chris Bauer and Tracy Roberts lead meaningful lives and make a positive impact in their communities.