In mainstream employment, disability supported employment, a day program setting or volunteer work someone with Prader-Willi Syndrome is eager to please, therefore will work hard to earn your praise for a job well done. With the right environmental structure and supports, someone with Prader-Willi Syndrome can be one of your hardest working and valued employees.
Employees with Prader-Willi Syndrome often have an enormous amount of patience and perseverance with tasks that are repetitive in nature.
Prader-Willi Syndrome (PWS) is a rare, complex, unique, multistage genetic disorder. It is a spectrum disorder and symptoms vary in severity and occurrence among individuals. PWS affects the part of their brain called the hypothalamus, which is responsible for the regulation of all the systems in the body and the resultant regulation of hunger, thirst, temperature, emotional regulation, pain and stimulation hormone production amongst others. People with Prader-Willi Syndrome experience a constant preoccupation with food accompanied by an unrelenting, overwhelming physiological drive to eat called hyperphagia.
The International Prader-Willi Syndrome Organisation (IPSOW) provides information on their website to help us understand the hunger drive in people with PWS. Their website states the following:
“To understand the importance of this hunger drive, try to look at Prader-Willi Syndrome as a ‘starvation’ syndrome rather than an over-eating one. Because of the dysfunction in the hypothalamus, there is no on/off mechanism that tells the brain, “I’ve eaten enough”. What happens instead is that the brain keeps telling the stomach, “you’re starving, you need food”, and the drive to find food overrides everything else”The International Prader-Willi Syndrome Organisation (IPSOW)
To ensure you get the most out of your employee, it is important for Employers, managers and those who support people with Prader-Willi Syndrome to understand the importance of providing an appropriate workplace that consists of the right environmental controls and supports. Employers who able to make the relatively minor changes to accommodate their employee with Prader-Willi Syndrome will find they have invested in a productive and valuable employee
We recommend that anyone who cares for someone with Prader-Willi Syndrome read through as much information within this website as possible, to ensure a thorough understanding of the requirements for safety and adequate support.
The Prader-Willi Syndrome Association of Victoria Inc. (PWSA Victoria) is a volunteer led ACNC registered Australian Charity committed to working with prospective and current employees of people with Prader-Willi Syndrome. We can work with you and any support persons required to help create an environment in which employees with Prader-Willi Syndrome can thrive and be a very productive and valued part of your team.
For a consultation, please contact the Prader-Willi Syndrome Association of Victoria on 0451 797 284 or email us at firstname.lastname@example.org.