May is a special month. It is a month when we take time to spread the word about a syndrome that is near to our hearts. Although many of us do this year round, May is the month that congress established PWS awareness month in 2009. The meaning of this is best described by PWSAUSA:
- Please help spread awareness of Prader-Willi syndrome and help save lives.
- Please help to create a compassionate environment for those who bravely struggle with this disorder, living in a world where the biggest threat to their lives is food-the very item they need to live.
- Please help create acceptance of our loved ones with PWS, who struggle in a society that shuns those who are overweight.
Those with PWS just want to live a healthy life with acceptance of who they are, just like anyone else.
At Latham, we take this month to focus on community awareness. Today, myself and other members of the Latham team gave a training for the Cape Cod Hospital emergency room staff. While in our care our children and adults are guaranteed quality care and adherence to best practices and we need to ensure that when the care gets shifted that those people are also well trained. I'm happy to say that we were met with interest and compassion from the hospital staff.
We are all familiar with the quizzical stare that we get when we talk about PWS to an outside person who has never heard of it (which is just about everyone!) and the frustration when even after our explanation someone decides that one lollipop or cookie can't possibly hurt.This is our time, our month to spread the word and teach our communities about the needs of our kids and adults.I have experienced that most people welcome the knowledge and people in general want to do good and want to do what's right. All they need is a little information and the more people who have that, the better off our kids will be.
Manager of PWS Services
Rare Disease Day
Students Helping Students Understand PWS