Prader-Willi syndrome (PWS) is a rare, complex genetic disorder that affects both males and females from birth and throughout their lives.

It causes low muscle tone with consequent motor developmental delays, a mild to moderate learning difficulty, incomplete sexual development, and emotional and social immaturity, which can lead to challenging behaviours.

During childhood, an overwhelming and insatiable chronic appetite usually develops which, without rigorous food management and exercise regimes, leads to food seeking, stealing and life threatening obesity. Prader-Willi syndrome occurs randomly in about 1:22,000 births and it is estimated that there are about 2,000 living with PWS in the UK.

The condition is quite often recognised shortly after birth, though this isn’t always the case. There are some distinctive signs that can lead to early diagnosis such as noticeable feeding problems and weak muscles. Babies who display floppiness after birth may be tested for Prader-Willi syndrome as a result.

Characteristics include:

  • Poor muscle tone
  • Overwhelming appetite
  • Challenging behaviours
  • Emotional and social immaturity
  • Immature sexual development
  • Global development delay
  • Learning difficulty or disability
  • Distinctive facial features

Living with Prader-Willi syndrome

There isn’t a cure for the condition as yet, however, with a good knowledge of the syndrome itself, symptoms can be managed and supported.

Advice and Support

The Prader-Willi Syndrome Association UK (PWSA UK) offer lots of information and advice for people with the condition and their families.

May is Prader-Willi syndrome awareness month both in the UK and across the world.  PWSA UK offer fundraising and awareness packs for schools and employers and run a social media campaign each year. You can also help raise awareness of the condition by wearing orange on the last Friday of May and making a donation to PWSA UK.

You can find out more about PWSA UK here.

You can also read information about the condition on the NHS website.