We have a new guide from our Famcare Board which looks at how to support a person with PWS to manage their temperature.

Some time ago our advice line was contacted by a person with PWS who asked how hot their bath should be. This was a good question. People with PWS do not have the same reaction to hot and cold as other people do, and so they often need support to help them to make good decisions, for example about bath temperature or what clothes to wear when the weather changes.

Our Famcare Board agreed this was an important issue for them to investigate and this has resulted in their new factsheet, Too hot, Too cold: Abnormal temperature sensation.

In this guide the Famcare Board outline some of the main issues that a person with PWS might need support with, these can include:

    • Setting a safe temperature in the bath or shower and thinking about how long to stay in the water.
    • Deciding on which clothes to wear and understanding why they suit particular weather conditions.
    • Using the appropriate bedding for the season.
    • Taking action when a person with PWS is feeling unwell and ensuring that their physician knows about thermal dysregulation in PWS.

We hope this guide will help families discuss these issues together.