Hft | Learning Disabilities and other challenges | Prader-Willi syndrome

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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, though 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 during a child’s early years through use of a symptom checklist, confirmed through genetic testing.  There is no cure for Prader-Willi syndrome, though research is being undertaken that aims to identify the genes that are involved in its cause.

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, in the most effective way possible.

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 adults with learning disabilities 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.
  • NHS Choices provides a range of information and links to further useful resources.