Services: Prader-Willi Syndrome

What is Prader-Willi Syndrome?

Prader-Willi Syndrome (PWS) is a rare genetic disorder affecting one in 15,000 people. Characteristics of the syndrome include low muscle tone, short stature, cognitive disabilities, problem behaviors, and a chronic feeling of hunger that can lead to excessive overeating and life-threatening obesity.

There is no medical prevention or cure for PWS. However, prevention of obesity can enable those with the syndrome to live a normal lifespan.

For more information on PWS, visit the Prader-Willi Association Web site at http://www.pwsausa.org.

How is Mainstay Life Services involved?

Mainstay Life Services operates two of the only multi-resident community homes in Pittsburgh for individuals with PWS. The first house was purchased in February of 2000, and today is home to 3 young men. The success of this first house, and the growing demand for services to individuals with PWS, led to Mainstay Life Services developing a second home. This house, specifically designed to meet the needs of women with PWS, opened in the fall of 2004 and is home to 3 women.

We were able to open these homes thanks to help from the Children’s Institute, which houses a world-class in-patient and out-patient program for PWS - the only of its kind in the United States. The Children’s Institute was a resource for us initially, and we continue to work together in a variety of ways.

For more information on the Children’s Institute’s in-patient program for PWS visit their Web site at http://www.amazingkids.org.

PWS Resources for families and agencies

Together, Mainstay Life Services and the Children’s Institute hold a wealth of knowledge, experience and expertise. We focus on transitioning from an in-patient program to community based living, and managing lifelong needs for individuals with PWS. The goal is to teach others, including families and service providers, how to deal with PWS at home or in a group living situation.

What we’ve learned about PWS outpatient care

We’ve learned from experience that there are a variety of things that can be done to improve at-home care for individuals with PWS, whether living at home with family or in a community-based group living situation. Many safety modifications can be made to the home environment without detracting from aesthetic appeal. Careful meal planning is crucial, and can be made possible with nutritional guidelines and menus. Regular exercise is also important and there are many ways to incorporate exercise into daily routines. Other modifications can be made based on individual needs to create a safe and healthy atmosphere for growth.

How community living works

With careful planning and 24-hour supervision, persons with PWS are able to live independent lives in the community and enjoy the many activities of a full life.

Mainstay Life Services' staff receive extensive and continuous on-site PWS training. Staff also visit the Children’s Institute’s in-patient program, which allows hands-on experience with a variety of people and provides insight and understanding about the nature of the syndrome.

Meals at our 2 homes are carefully planned and prepared in advance. Nutritional, calorie-regulated menus are provided with help from Children’s Institute nutritionists.

Exercise is incorporated into daily life. Each individual exercises an hour per day, whether it’s going to a local gym, taking walks in the park, playing soccer or catch in the backyard, or using cardio-vascular equipment in the home exercise room.

Although supervised, individuals are encouraged to pursue their own interests and maintain friendships outside of home life. Each participates in a variety of activities that ensure a full life.

Would you like to learn more?

Mainstay Life Servcies is available to speak to your group and individual consultation is available for persons and families living with PWS. Contact our Director of Program Operations at (412) 344-3640 for more information.