Tip of the Week: PWS Awareness Month (Week 5)
June 1, 2018
In honor of Prader-Willi Syndrome Awareness Month, we shared a “Tip of the Day” on social media throughout the month of May. Here are this week’s tips:
People with PWS experience temperature differently. Layering clothing in summer and shorts in winter is not uncommon. Have a picture in their room of what appropriate clothing for the season should look like.
Misunderstandings are a common cause of anxiety and outbursts in people with PWS. Always check to be sure that your communication is clear before assuming that the individual understands what you are trying to say or ask.
Sleep issues are common in people with PWS. Daytime fatigue and lack of energy can be helped with scheduled naps for both children and adults.
Poor muscle tone is a lifelong challenge for people with PWS. Growth hormone and daily exercise can help to maintain muscle mass.
People with PWS do not always have the same amount of choices as their typical peers which can lead to frustration. Offer as many safe choices as you can every day.
“In all of my years working in human services, I have never met a group of people who were more fun, loving, creative, and worthy of the best services possible than people with Prader-Willi syndrome. It has been an honor to be a part of their lives and the lives of their families.”–Patrice Carroll
Patrice Carroll is Latham Centers’ world-renowned Prader-Willi Syndrome specialist. She works with Latham Centers’ residents with PWS, their families and consultants, continuously learning and teaching about PWS best practices.