Here’s What You Should Know About Prader-Willi syndrome

Prader-Willi syndrome (PWS) is a rare genetic condition that causes a wide range of problems.

These include:

A constant desire to eat food, which seems driven by a permanent feeling of hunger and can easily lead to dangerous weight gain
restricted growth, leading to short stature
reduced muscle tone
learning difficulties
lack of sexual development
behavioural problems, such as temper tantrums or stubbornness

It is caused by a genetic defect on chromosome number 15, which happens purely by chance, and is usually diagnosed by carrying out genetic tests.

Sadly, there is no cure for the condition.
Prader-Willi syndrome is a rare genetic condition that causes a wide range of problems such as overeating. Parents of children with the condition usually have to restrict their diet and lock up all food

Prader-Willi syndrome is a rare genetic condition that causes a wide range of problems such as overeating. Parents of children with the condition usually have to restrict their diet and lock up all food

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Instead, a team of healthcare professionals will help teach parents to manage any problems the child has, such as overeating.

Children usually want to eat frequently, so it is important that most of the food they eat is low in calories, and that access to sweets and fatty foods is restricted.

Getting the child to stick to an eating plan voluntarily is practically impossible, so parents usually need to lock any storage areas that contain foods, such as fridge or cupboards.

They should also search the child’s room for hidden foods, forbid them to leave the house unsupervised, or play with other children who are eating food, in case they try to steal it.

Any family, friends or teachers should be informed of the need to restrict their diet.

The child should also be encouraged to exercise as much as possible.

If the child has restricted growth, treatment with an artificial version of the human growth hormone (HGH) is usually recommended, as it can increase their final adult height by around 10.5cm (4.1 inches).

Most adults with Prader-Willi syndrome are unable to live fully independent lives, such as having a full-time job and living in their own home.

Their behavioural issues and problems with food mean these environments and situations are too demanding.

Adults with the syndrome who don’t live with their parents will probably require residential care.

 

Source: NHS Choices\Rayoonline

 

For more information, visit the Prader-Willi Association website: http://www.pwsa.co.uk

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