Support for People with Prader-Willi Syndrome
By People Inc.
Prader-Willi Syndrome (PWS) is a rare and complex genetic disorder due to chromosomal abnormality that affects 350,000 people worldwide. PWS is associated with difficulty swallowing, difficulty regulating body temperature, growth hormone deficiency, behavior challenges, learning disabilities, and developmental delays. Individuals with PWS qualify for services through the NY State Office for People with Developmental Disabilities.
People Inc. provides support to 14 individuals with PWS through three specially designed community-based residences in Western New York and Rochester. Chris Spink has lived at the Lackawanna residence since 2008, and appreciates the support he receives in managing his complicated life.
“It’s more than an eating disorder, there is a chromosome that doesn’t allow my brain to work like it should. I used to weigh 311 pounds, now I’m down to 130. Since there is nothing to remind us that we are full, everything we eat must be locked-up, so we aren’t tempted to think about and try to get to food outside of mealtimes. Everything we eat is based on what the dietitian creates, with controlled portions and limited calories. We can change something out if we don’t like it, but I like everything that’s on the menu,” says Spink. He appreciates activities and structure which help distract him from his preoccupation with food that often leads to anxiety.
People Inc. Residential Director Ed Gramse derives great satisfaction from watching PWS residents grow at home and in the community to become more independent. “Don’t judge a book by its cover just because someone is overweight or might be having a difficult moment. Get to know the person and support them,” says Behavior Intervention Specialist Michael Herrmann.
Learn about People Inc.’s unique programs at www.people-inc.org. Learn more about PWS at www.pwsausa.org.