Persons with Prader-Willi syndrome (PWS) will work hard to earn your praise for a job well done. Given the correct environmental structure and supports, someone with PWS can be one of your hardest working and valued employees.
When it comes to tasks like sorting, shredding, adhering stamps onto cards, repetitive responsibilities of this nature, and some computer work, employees with PWS often have tremendous patience and perseverance, often more so than other workers.
Prader-Willi syndrome is a rare and complex medical disorder that affects an important supervisory center in the brain that controls many functions of the body including muscle strength, growth, metabolism, appetite regulation, and the management of emotions. Beginning some time in childhood, the brain fails to regulate appetite normally. For the individual with PWS there is a constant preoccupation with food accompanied by an unrelenting, overwhelming physiological drive to eat called hyperphagia. Normal satiety — the feeling of fullness after eating – does not exist no matter how much food is eaten. The metabolic rate is about half what it should be, so individuals with PWS can gain a great deal of weight in a very short period of time causing morbid obesity and life-threatening stomach or bowel complications.
There is currently no known medication that will control or even reduce the drive to eat, though research is making great progress toward developing a medication specifically for persons with PWS.
When access to food is secure and managed well, the individual with PWS can focus on the task at hand and perform a job well done. Simple changes can include keeping employees’ lunches and other food items in a manager’s office or some other secured area and limiting access to vending machines and money that can be used to purchase food items from the cafeteria, mobile food trucks, local fast-food restaurants. On work sites where restricting access to food with locks is not feasible or where the individual with PWS has a history of eloping, one-to-one supervision will be necessary.
Employers who able to make the relatively minor changes to accommodate their employee with PWS will find they have invested in a productive and valuable employee.
The Prader-Willi Syndrome Association (USA) is a non-profit organization dedicated to serving persons with PWS and their families. PWSA (USA) will provide information to employers who hire someone with PWS and help you create an environment in which your employee with PWS can thrive and be a productive employee. Working together, we are saving and transforming lives.
For more information about Prader-Willi syndrome or to speak with someone about how to organize your worksite to help your employee with PWS, contact PWSA (USA) at 800-926-4797 or firstname.lastname@example.org or visit www.pwsausa.org.