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What is Prader-Willi syndrome?

Prader-Willi syndrome is a rare genetic condition caused by a chance defect to chromosome 15 at the point of conception. In rare cases, a non-genetic form of Prader-Willi syndrome can also be acquired through injury to the hypothalamus.

Prader-Willi syndrome is usually identified in young children through a symptom checklist, and confirmed through genetic testing.  There is no cure for Prader-Willi syndrome, though research is currently trying to find the genes involved in causing it.

Treatment for the feeding issues associated with the syndrome is usually focused on maintaining a healthy diet and exercise, while restricting access to excess food – though this can result in challenging behaviour. Growth hormones can help in mitigating against some of the developmental aspects of the condition.

With appropriate care, people with Prader-Willi syndrome can be supported to achieve the life they want.

Signs of Prader-Willi syndrome

Symptoms can vary, and can affect people to differing degrees.  They typically include: –

  • Feeding problems in very early years

  • Constant hunger, leading to a strong desire to eat a lot of food, which in turn can lead to obesity and associated illnesses, such as type 2 diabetes

  • Restricted growth

  • Hypotonia – meaning reduced muscle tone (‘floppyness’)

  • Hypogonadism – meaning lack of sexual development

  • Challenging behaviour

  • Learning disability, compounded by under-developed emotional and social skills

Support for people with Prader-Willi syndrome

  • Hft supports learning disabled adults, including those with Prader-Willi syndrome, to live the best life possible. Contact your local service to discuss support options.

  • If you’re a family carer for someone with Prader-Willi syndrome, Hft’s Family Carer Support Service can help with guidance and advice on support options and some of the benefits that are available.

  • The Prader-Willi Syndrome Association provides more information and guidance for people with Prader-Willi syndrome, their families, and for professionals.

  • The NHS provides a range of information and links to further useful resources.