Prader-Willi Syndrome

  • We have just learned that our son has Prader-Willi syndrome. Sometimes he acts bulimic. What’s the difference?

Prader-Willi syndrome is a congenital problem that affects one in every ten to fifteen thousand children. It includes the following characteristics:

    • Mental retardation.
    • Behavior problems, some of them severe
    • Speech problems
    • Muscle weakness
    • Abnormal growth
    • In some children, unpredictable rage attacks
    • Constant hunger and an implacable drive to eat.
  • Discussion

People who have Prader-Willi syndrome will lie, cheat, and steal to get food. If their access to food is not controlled, they will gorge until they become so obese that they die. They do not vomit or purge in other ways as bulimics do.

Paradoxically, Prader-Willi babies are usually thin and weak. They eat very poorly. When they do begin to eat, however, they do not stop.

Sometimes Prader-Willi is mistakenly thought to be bulimia. Bulimia is a psychosomatic disorder. The person tries to solve problems and improve self-esteem by losing weight. The unhealthy weight loss behaviors hurt the body. Prader-Willi, on the other hand, is the result of a genetic defect. The person shows little concern about body image and gorges because the physiological brakes that control appetite and hunger are defective.

Researchers have not yet discovered what causes the genetic defect that leads to Prader-Willi. It does not seem to run in families. It involves some sort of malfunctioning in the hypothalamus, a major control center in the brain.

Prader-Willi syndrome is difficult to manage in the home. Prozac and other psychiatric medications can help, but there is no cure. You have our best wishes as you struggle with this sad and frustrating situation.