Tip of the Week: PWS Awareness Month (Week 5)

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 have a slow metabolism. It takes far fewer calories for them to gain weight than it does for a person without PWS. Always consult with a nutritionist and physician to determine the ideal daily caloric intake.

• Compulsive behaviors like hoarding and skin picking are common in PWS. Anxiety will increase the frequency and severity of these behaviors. Decrease the anxiety and you will decrease the behaviors.

• People diagnosed with PWS have poor impulse control. Don’t assume that if they do something that you’ve repeatedly asked them not to do that they are simply being defiant. It is more likely that they are acting on impulse and don’t have the internal mechanism to stop themselves. This can improve over time with patience and lots of teaching.

• People diagnosed with PWS have a high sensitivity to medication, especially anesthesia. Be sure to give your doctor the medical guidelines found at PWSAUSA.com before any procedure involving anesthesia.

• People with PWS often have fair skin due to a lack of melanin. Be extra careful in the sun because sunburns can happen very easily. Always use sunblock, even on an overcast day.

• People with PWS have an innate ability to recognize when somebody isn’t feeling well. They will be the first people to know if you’re feeling sick or upset and this ability makes them especially good, if supervised, at caring for animals because they are able to recognize slight changes in mood and behavior.

• We hope that over the past month, we have shown you the struggles and wonders of people with PWS. With all of the challenges, these individuals meet each day with bravery, hope, and strength. I will forever be in awe by their tenacity and optimism.

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.