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

May 25, 2018

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 often have co-occurring mental health diagnoses. Be sure that the psychiatrist prescribing medication is knowledgeable about the syndrome.

  • Individuals with PWS typically enter puberty later than their typical peers and some never complete the process.

  • Individuals with PWS have a difficult time reading social cues. Don’t rely on facial expressions to get your point across. Always follow up with clear verbal communication.

  • Most individuals with PWS have a list of challenges that we would like to address, but never forget that the list of what is good about them is much longer than the list of challenges.

  • Individuals with PWS typically have lighter skin than the rest of their family due to a decrease in melatonin. Be very mindful of sunburns year-round.

  • A slow metabolism makes for quick weight gain, even with just a few extra calories. For those with PWS, be mindful of giving extra food, even on occasion.

  • Some individuals diagnosed with PWS can become overwhelmed with too many choices. Always offer choices when possible but keep them to two or three so children and adults don’t become anxious.

 

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.