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May Is Prader-Willi Awareness Month: Genetic Disorder Causes Chronic Hunger

Children with Prader Willi Syndrome Often Wear Glasses
Children with Prader Willi Syndrome Often Wear Glasses

A national awareness campaign to raise awareness about Prader-Willi Syndrome (PWS) is happening right now and for the entire month of May. This campaign gives people an opportunity to learn more about this complex genetic disorder whose hallmark is insatiable hunger. Throughout the country, there are events taking place to spotlight the disease, support the Prader-Willi community, and raise funds for research. In Florida, the Prader Willi Florida Association is a resource for information about local Prader Willi Awareness Month activities.

While PWS is the most common genetic cause of life-threatening obesity, most people have not even heard of the disease or, if they have, may have misunderstandings about it. The cause is an abnormality of chromosome 15. Approximately 1 in 15,000 people are born with PWS. Babies born with PWS have hypotonia or weak muscles, and they usually have difficult sucking. Feeding a baby with PWS usually initially involves a feeding tube and waking the baby for small feedings. Before the age of six, there is an about-face, and the chronic hunger surfaces. The problem becomes keeping food away from the child.

In addition to the chronic feeling of hunger, people with PWS have low muscle tone, short stature, incomplete sexual development, and a number of behavioral issues. Virtually all people with PWS have learning disabilities, and while there is a range of IQs, 70 is the average. People with PWS need constant supervision to prevent excessive eating. If a person with PWS, even one whose weight is well-controlled, has free access to food, the result can be death.

Prader Willi Syndrome is a lifelong disease. At this time, there is no cure. Treatment includes growth hormones to combat short stature, keeping the person active to burn calories, and preventing free access to food. Families who have a child with PWS are constantly aware of their child’s food issues and must plan their day-to-day lives around the child in order to keep the child safe. Eventually, most people with the disorder live in group homes specially run to monitor food intake and keep the residents active.

Research is vital to the future of PWS. The Prader Willi Association has a Scientific Advisory Board, a Clinical Advisory Board, and a Research Committee--all working with professional staff to identify where the needs are greatest in the PWS community. Raising funds to support research and for programs to improve the quality of life for those who have PWS are two more goals of the May PWS Awareness Month.

An important aspect of the awareness program is to help people to understand what people with PWS and their families cope with each day. The hope is that knowing about the disease will help the public be empathetic and supportive of these families. For more information on events, visit May Prader Willi Awareness events.


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