Spreading PWS Awareness

A Story From Our Community

Prader-Willi Syndrome (PWS) is present in our everyday lives. We’ve adapted and learned to live with PWS, but I want to do more. I want there to be continued awareness for this syndrome. I want people to know how it affects Allie, our family and her fellow PWS Warriors. Raising awareness can be overwhelming and hard - PWS affects our family in so many ways. So where do I start?

OPWSA saves the day! The site has great tools like the Calendar of Daily Activities and my favorite the amazing and informative. “Did you know slides…” Sometimes it’s difficult to find the right words to describe all of the many ways that PWS affects Allie’s and our lives. These slides help me share my stories and raise awareness. Whether I post the slide or share a story with the slide to help give some real-life context to them, I am raising awareness and reminding my network just how strong our Allie is. These slides also serve to remind me just how complex PWS is which is why May is such an important month for the PWS community.

Below you will see a post I shared on Facebook to help spread PWS awareness to my network. In the post, I've shared OPWSA's Did You Know slide about food related behaviours, and added some real life examples to help illustrate the day to day challenges of PWS.

We’re mid way through May – still plenty of time to spread awareness. If you follow me on Facebook or Instagram, please feel free to share my posts and stories. If you would like a copy of the slides, you can contact OPWSA at ontariopws@gmail.com.