This is one of the most common questions asked particularly by new parents and family members of a new-born baby or child with PWS. The syndrome is rare and in many parts of the world there is limited access to support and information. Most people, including many physicians and caregivers, are not familiar with this potentially very serious condition.

An early diagnosis of PWS is very important and allows families to learn what to expect and be knowledgeable about what support their child may need.

We are fortunate to work with and collaborate with leading researchers, doctors, caregivers, and physicians all over the world in order to discuss and share the latest information available on Prader-Willi syndrome. As of writing there is no cure for the condition or medication available to be prescribed to alleviate symptoms.

However, treatment for Prader-Willi syndrome is primarily symptomatic and most importantly consists of:

· Early diagnosis and intervention
· Weight Control
· Exercise
· Growth hormone replacement therapy
· Behaviour management
· Special education and sheltered or supported employment

You can read more about these areas of Prader-Willi syndrome treatment.

Weight control is achieved through best practice in nutritional intake and exercise. Access to food must be limited and regular (preferably daily) exercise should begin as early as possible. At the time of writing, there is no known medication that has been demonstrated to lessen the drive to eat, although much research is being conducted to find such a substance.

Read more on our Diet and Nutrition and Physical Health and Exercise pages.

If you want to ask a parent or professional, please visit our Helpline page.

Our Board largely consists of parents, complemented by a network of medical experts and advisers. We know what PWS is like and the impact it has on a family. If you want to find out more information about any aspect of the condition, please contact us and use our ‘Ask an Expert facility. Your questions can be answered by professionals in our network, or by parents who know what it’s like.

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