Tip of the Week: PWS Awareness Month (Week 4)

May 24, 2019

In honor of Prader-Willi Syndrome Awareness Month, we’re sharing a “Tip of the Day” on social media throughout the month of May. Here are this week’s tips:

  • People with PWS have an extremely high pain tolerance. Any complaints of pain should be taken seriously and brought the the attention of their doctors.

  • Daily exercise is essential for people with PWS because it maintains existing muscle tone, reduces anxiety, and helps with digestion. Exercise should be part of their daily routine but keep it fun and participate with them to help with motivation

  • Daytime fatigue is common in people diagnosed with PWS. Allow for frequent breaks to encourage concentration. It is typical for children with PWS to need a nap during the day.

  • It can be challenging for people with PWS to manage downtime. Due to executive functioning disorder, many children and adults have a difficult time with unstructured time. Try to set up a project before asking them to spend time independently.

  • Hypothermia can occur unexpectedly in people with PWS. Know the signs and seek medical attention immediately if you suspect a sudden drop in body temperature.

  • People with PWS struggle with impulse control. Be sure that rules and expectations are clear and reviewed often. Remember that the person with PWS wants to follow the rules, but sometimes anxiety and a high reward drive make it very difficult to do what is right. Be patient and teach as often as you can.

  • People with PWS have excellent senses of humor! Telling a joke can often defuse moments of anxiety. Try to avoid sarcasm as many may mistake it for teasing.

Patrice Carroll is Latham Centers’ world-renowned Prader-Willi syndrome specialist. She works with Latham’s residents with PWS, their families, and consultants, continuously learning and teaching about PWS best practices. Do you have questions for our PWS specialist? Submit your “tip” topics or general questions to TipTopics@LathamCenters.org.