The basics of a healthy adult life for someone with Prader-Willi Syndrome (PWS) include a healthy, appropriate eating plan and regular, effective physical activity to avoid obesity, to keep the body fit and to maintain good mental health. Before any of these can be achieved the people working with the person who has PWS must have a good understanding of the complexities of the syndrome. This “checklist” is to assist you in maintaining good health for your person with PWS. It is to be shared with other family members, professionals and caregivers who are involved with your person with PWS.
PWS is a genetic disorder which, due to a lack of expression of particular genes on the 15th chromosome. It effects several systems in the body. Below are listed some common problems seen in people with PWS, what the effect of the problem is on health and how it needs to be monitored or treated. Changes in physical health are often only detected or suspected because of changes in general behaviour so it’s important to know what to be aware of and what to check!