Prader-Willi syndrome

Prader-Willi syndrome occurs when several genes on chromosome 15 are deleted or not expressed. This happens by chance and is not passed down in families. Why it happens is unknown. This genetic change affects the part of your brain (the hypothalamus) that regulates hormones and appetite, as well as the development of muscle tone and expression of emotions. 

Video: Prader Willi, Understanding and Managing Behaviour part 2

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(Prader-Willi Syndrome Association NZ, 2015)

Babies tend to be floppy and have trouble sucking. By about 2 years old, children with Prader-Willi syndrome tend to be short for their age, with small hands and feet, and want to eat all the time.

They may have slow physical and mental development, be slower to learn to walk and talk, be stubborn and have temper tantrums.

Other problems develop during later on, such as obesity due to over-eating, osteoporosis, sleep and breathing issues, and lack of sexual development.

Talk to your doctor if you are concerned your child has Prader-Willi syndrome. A genetic test is needed to diagnose the condition.

Treatment aims to manage the symptoms associated with this condition.

This includes:

• a strict diet
• exercise to build muscle mass
• behaviour management.

Growth hormone treatment may be an option. This may lead to cognitive and other benefits as well.

Most people with Prader-Willi syndrome need specialised care and support from their families/whānau and healthcare providers throughout their lives.

Following the advice of healthcare providers in caring for your family member with Prader-Willi syndrome makes it easier for you and for them. This includes keeping food out of sight, sticking to a routine and being clear and firm in your instructions.

Remember to take care of your own needs for sleep, exercise, healthy eating and time for yourself. Counselling can help. Talk to your doctor for a recommendation or find a counsellor here(external link). 

It’s important that you get support for yourself (see the support options below).

Apps reviewed by Healthify

You may find it useful to look at some Self-management and healthy living apps and Nutrition, exercise and weight management apps.

Prader-Willi Syndrome Association NZ(external link) Freephone 0800 4 PWS HELP
Disability services funded by Health New Zealand | Te Whatu Ora