Tip of the Week: PWS Awareness (Prader-Willi tips ‘Week 2’)

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

• Temperature regulation is an issue for people with PWS. They run the risk of not feeling the very cold temperatures in the winter, as well as tending to easily overheat in the summer.

• Aggression can occur when the person with PWS feels overwhelmed or highly anxious. Trying to stick to a routine and having clear expectations can help reduce aggressive episodes.

• Many people with PWS share a love of animals. Encouraging responsible pet ownership can have a lasting positive effect, regardless of the kind of pet that they have. Although children and adults living with PWS often excel at working with animals, supervision must be made available due to lack of impulse control and being easily overwhelmed. But with the proper supports, animal care is typically an excellent vocational option.

• Individuals with PWS live with Executive Functioning Disorder as well, making it very difficult to start and end a task. Be sure the person has clear steps to take to complete a project.

• Keep skin well-lotioned, especially during the dryer months. Dry skin can lead to skin picking and infections.

• Early-onset osteoporosis happens frequently in the PWS population. Speak to your child’s doctor about bone health from an early age.

• Point out their triggers. The more your child understands what causes their anxiety, the more successful they will be in managing their own feelings and actions. Coping skills can be created and taught based on individual triggers.

Though there are many challenges associated with PWS, there is also an endless list of positives and strengths. We never want to forget the wonderful qualities that our kids have despite some challenges along the way.

Patrice Carroll, Latham Centers’ Director of PWS Services, is world-renowned for her Prader-Willi syndrome expertise. She works with Latham students and residents, their families, and other experts, continuously learning and teaching about PWS best practices. If you have PWS-related questions, we invite you to email TipTopics@LathamCenters.org.