A special contribution by guest blogger Elizabeth Roof
Elizabeth Roof is a Senior Research Specialist at the Vanderbilt Kennedy Center and directs six research programs with children and adults with rare genetic disorders including Prader-Willi syndrome. Since 1995, she has personally evaluated more than 300 individuals with PWS. She has given a number of talks and presentations at international, national, and local conferences about current research practices and implications for treatment. She has helped write and produce three YouTube videos with FPWR and IPWSO on best practices in PWS, including her latest video on improving social functioning. Elizabeth with be joining us this year at FPWR's Annual Family Conference in Indianapolis, IN, August 25-27. Join us!
Many people believe that teens and adults with Prader-Willi syndrome don’t care much about making and keeping friends. We know, after seeing hundreds of people with PWS, that this just isn’t true for most. Many teens and young adults with PWs complain that they're lonely, they don’t have many opportunities to make friends, and it's hard to keep friends over time. A lack of social connection can make you lonely, anxious, and depressed. This is a very real struggle for many with PWS. They want to have friends, they want to do things out in the community, and they long for real connection with someone who accepts and understands them. We all do. Having friends and social opportunities mean less depression, isolation and psychiatric issues as people age.