What We Want You To Know About Us PWSA (USA) Advisory Board
For PWS Awareness Month, the Advisory Board of adults with Prader-Willi
syndrome (PWS) defined what they wanted to share with the world. The following
are their thoughts and words from our Advisory Board meeting.
Prader-Willi syndrome comes in all sizes, shapes and colors.
If I am slim, it is due to a lot of effort by me, my parents, and care
providers.
Don’t give me food or money without my parents or care provider’s
permission.
Please keep food temptations away from me.
Prader-Willi syndrome is not the true shame, it is you bustin on me and
you don’t even know my name (From the PWS rap song, “My Name’s not Willi!”)
Talk to me directly, not the person with me. Respect me as an adult.
Please understand that my muscle strength and energy are lower than
yours.
I have hopes and dreams and goals – just like you.
