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PWS by Age

Birth - 2 Years

When a child with Prader-Willi syndrome (PWS) is born, it can be a very difficult time for families as they come to terms with the diagnosis and all its implications. Babies and young children are usually seen by a variety of professional specialists including paediatricians, endocrinologists, speech therapists and dietitians.

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2 - 5 Years

Children in this age group are often very loveable, making friends wherever they go. The interest in food may have begun to develop, though this may vary considerably in the way it manifests. For some it is simply a heightened interest, for others there may be more evident food-seeking. Toddlers and young children are usually seen by a variety of professional specialists including paediatricians, endocrinologists, speech therapists and dietitians.

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5 - 10 Years

Many children in this age group are in mainstream schools with support. All should have an Education, Health and Care Plan (EHCP), regardless of their intellectual abilities, as other features of PWS can impact on learning. Many will also have started growth hormone therapy which will aid both their growth and muscle tone. They will continue to be seen by a variety of a health professionals including paediatricians, endocrinologists, and dietitians.

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10 - 13 Years

While children in this age group may continue to thrive in mainstream schools with support, some may begin to experience difficulties in the surroundings of large secondary schools. All should have an Education, Health and Care Plan (EHCP), regardless of their intellectual abilities, as other features of PWS can impact on learning. For some, challenging behaviour may also be an issue. They will continue to be seen by a variety of a health professionals including paediatricians and endocrinologists.

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13 - 18 Years

The teenage years can be a difficult time for all young people, and those with PWS are no different. There may be additional issues with regard to emotional and sexual development and, for some, challenging behaviour may also be an issue. They will continue to be seen by a variety of a health professionals including paediatricians and endocrinologists.

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18 - 25 Years

With adulthood comes further challenges, particularly around increasing independence and the lack of understanding about the very special needs of those with PWS on the part of some who work with them. Usually, instead of being under the care of a particular health professional such as a paediatrician as they were when children, adults will be seen by different specialisms for their health care.

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25 - 40 Years

As the person with PWS grows older, their parents may no longer be able to care for them. This is often when supported living or residential care is considered. Whatever form of living away from home is decided upon, it must always be tailored to the needs of the person with PWS, with trained and knowledgeable care staff. This is also a time when increasing weight, where it has not been well-controlled, can become a serious health issue.

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40 + Years

Previously it was thought that people with PWS would not live much past their early middle age, but there are now a significant number we know of who are in their 40s and 50s, and a few in their 60s. The oldest person we know of lived to be 74 years old. However, our knowledge of how PWS affects people in their later years is quite limited because very little research has been done in this area, and the number of people in this age group remains comparatively small.

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