Prader-Willi syndrome 

Introduction 

Prader-Willi syndrome

Prader-Willi syndrome is a rare genetic disorder that causes characteristics such as obesity due to an excessive appetite. A psychiatrist explains the different symptoms. Also find out how Sharon copes with her daughter Daisy’s condition, and how she prevents Daisy from overeating.

Media last reviewed: 27/03/2014

Next review due: 27/03/2016

PWSA UK

The Prader-Willi Syndrome Association (PWSA UK) helps provide information and support for those whose lives are affected by PWS.

You can also contact the PWSA through their helpline on 01332 365676.

Special needs in children

If your child has a health condition or disability, they may need specialised healthcare and help at school

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

Symptoms may 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 secondary sexual development
  • behavioural problems, such as temper tantrums or stubbornness

Read more about symptoms of Prader-Willi syndrome.

Who is affected?

PWS is rare, affecting no more than one in every 15,000 children born in England. Boys and girls of all ethnic backgrounds may be affected.

There are no known factors that make giving birth to a child with PWS more likely. It is caused by a fault in the child's chromosomes, which happens purely by chance.

Read more about the causes of Prader-Willi syndrome.

Living with Prader-Willi syndrome

There is no cure for PWS, so treatment aims to manage the symptoms and associated problems. For parents, this includes dealing with their child's behavioural problems and excessive eating.

Read more about managing Prader-Willi syndrome.

Restricting your child's diet is a particularly important part of managing their condition. If children with PWS are allowed to eat as much as they want, they will quickly become dangerously overweight. They will eat three to six times more than other children of the same age, and will probably still feel hungry.

However, restricting a child's diet is not easy. They can be highly obsessive when it comes to eating, and their hunger can cause them to hide or steal food.

Outlook

While PWS itself is not life threatening, the compulsive eating and resulting weight gain can be.

Younger adults with PWS often develop obesity-related conditions usually seen in older adults, such as type 2 diabetes and heart failure. If the obesity is not treated, an adult with PWS will probably die a lot younger than would normally be expected.

Compulsive eating can also cause health problems such as an abnormally expanded stomach and choking. Because of the potential risk of choking, all parents of a child with PWS are advised to learn the Heimlich manoeuvre. 

Read more about what to do if someone is choking.

If a child with PWS manages to follow a restricted diet and control their weight, there is no reason why they cannot enjoy a good quality of life and take part in activities such as voluntary or part-time work. However, because of their behavioural problems and learning difficulties, it is unlikely they will be able to live fully independent lives.

Page last reviewed: 22/11/2012

Next review due: 22/11/2014

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The 3 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Johnandsue said on 31 July 2011

My daughter is now 37 years of age and is fairly independant. She lives with her disabled boyfriend but of course her PWS is a huge part of her life. We obviously cannot control all her eating habits and she
is now large. She has a lot of obsessive behaviour buying too much of anything seems to be the most.
She is a lovely person but cannot be changed with her eating patterns, we have tried everything over the years. She is now a very happy and contended adult with all her problems. She would like some help and so would I but have never found anything to help her properly, especially at her age now. Maybe there is something out there for her, perhaps this is the place to be..

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Bexyboo said on 28 March 2011

no offence to anyone :-)

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Bexyboo said on 28 March 2011

my 19yr old son has PWS and I always find that 'the best scenario' of the disease is shown in the media, my son is very severe, no speech, mental age about 3yrs cant do toileting and showering on his own,has epilepsy,scoliosis,perthes disease,to name a few.sometimes I wish that it's shown in alls its glory,I find I,d love him to be as unaffected as all the chidren/adults shown in the media!!

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