Prader-Willi syndrome (PWS) is a congenital disorder associated with chromosome 15 which first appeared in the literature in 1956. In the last half century much has been done to increase knowledge of, and interventions for, PWS. While the focus of most research, and the allocation of research dollars, is on the medical aspects of the disorder, it is in the areas of lifestyle and the activities of daily living where parents most often require assistance. Through the promotion of Canadian resources this site aims to provide support to the non-medical aspects of PWS.
Quality of life is the unifying theme of this site. It encompasses the quality of life of the person with PWS as well as those of the parents/caregivers and families. It has to do with an individual’s enjoyment of, or satisfaction with, personal life circumstances. It is hoped that in the content of this site readers will find encouragement, new insights and new resources to augment their quality of life.
About this Site
This site is dedicated to the non-medical aspects of PWS, as suggested by the topics in the sidebar panel. It is concerned with lifestyle and activities of daily living in the broadest sense. It will provide resources and be a forum for issues that affect the quality of life of those with PWS as well as their parents/caregivers/families.
Readers are directed to the web site of the Foundation for Prader-Willi Research Canada for the latest in medical research. (www.fpwr.ca)
This site is the sole property of the author and is not formally affiliated with any PWS organization or sponsor. The opinions expressed herein are those of the identified writers, and not necessarily those of the site owner.
Prader-Willi Syndrome Organizations
PWS parents are often unsure as to whether to attend meetings of their local or provincial PWS association. Some explain that they do not want to focus on more PWS problems and that attending is not an uplifting experience. Others value the new insights that they gain and the support of understanding peers. Because the associations support individuals with PWS throughout the lifespan the agenda issues may or may not be of interest. Even if parents choose not to attend the local/provincial meetings, they are encouraged to affiliate with Prader-Willi syndrome associations at national and international levels. It is important to be hooked into the Prader-Willi community at some level in order to stay abreast of the most recent developments. Please visit the Links section for more details and addresses.
I have a blog on this website that I’ll endeavour to update regularly. The purpose of the blog is to encourage parent and professional dialogue on non-medical issues related to Prader-Willi syndrome. Readers are invited to respond to posted comments or to introduce a new topic of interest. Continue Reading
Prader-Willi Syndrome in Canada
Canadians enjoy a high standard of living and longevity of life. All citizens benefit from a system of universal health care which gives equal access to needed medical services throught the lifespan. Childrens’s hospitals in each of the provinces provide high quality neonatal and childhood care. Continue Reading
My first experience with PWS came as a special education teacher when I worked with a young teen with PWS. She was the first student with PWS in our school and community. The management of her educational program involved home, school and community cooperation. The challenges of working with someone with Prader-Willi syndrome was a time of learning for me and my colleagues. Continue Reading