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Frequently Asked Questions

What is Prader-Willi Syndrome?

PWS is a complex genetic disorder caused by a deletion in chromosome 15.  The deletion has a range of physical, intellectual and behavioural effects on individuals.  The most distinctive impact on older children and adults is a persistent sense of hunger and lack of satiation.  This can lead to obesity, if not effectively managed. 

How common is PWS?

The prevalence of PWS is estimated to be between 1:12,000 and 1:15,000 births.  PWS occurs at the same rate for males and females in all races. 

How is PWS diagnosed?

There are clinical criteria for a diagnosis of PWS, but chromosome analysis provides the most reliable and useful diagnosis.  

What are some typical characteristics of individuals with PWS?

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What other health problems may be associated with PWS?

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Is there a cure for PWS?

While a "cure" is not currently available, there are many medical and behavioural interventions that can minimize the impact of the genetic condition, allowing the individual to lead a life that is normal in many respects.  Early diagnosis, treatment and multi-disciplinary management all play important roles.

What medical treatment is available for individuals with PWS?

Access to specialized medical treatment begins with the primary care physician.  Since PWS is relatively rare, many family physicians may be unfamiliar with this complex disorder.  The Ontario PWS Association (OPWSA) provides excellent information and linkages to medical expertise in PWS.

When there is a clear diagnosis of PWS, growth hormone treatment can produce effective results.  It supplements the pituitary gland, helping the individual achieve normal stature, improve muscle tone, and maintain bone density and a healthier fat to muscle ratio.  An endocrinologist does the assessment and manages growth hormone treatment.

Depending on the needs of the individual, a variety of other interventions may be delivered by medical professionals, such as a developmental pediatrician, neurologist, orthopedic specialist, orthotist, optomologist, dentist, psychiatrist, or psychologist. 

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What non-medical interventions benefit individuals with PWS and their families?

Since PWS may include a combination of cognitive disabilities and behavioural challenges, in addition to medical issues, a wide range of services and supports may be beneficial, including:

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What is the PWS Network?

The PWS Network was established in 2006:

Members of the PWS Network are service providers located in Central West Region, in southern Ontario, Canada.  Those who currently, or potentially, provide services to individuals with PWS are listed in the Directory.  Other providers are corresponding Network members.   The Network is closely associated with the Ontario PWS Association.

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