Series 3 Episode 17: Jennifer and Helen. Prader Willi syndrome hunger that never goes away

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Jennifer has Prader Willi syndrome; she and her mother Helen explain the lifelong impact this has had on all aspects of life.  A major challenge is that Jennifer is continually hungry and so access to food needs to be always controlled.

Prader-Willi syndrome is a rare genetic condition that affects about 2000 people in the UK.  Typical symptoms of Prader-Willi syndrome include: an excessive appetite and overeating, which can easily lead to dangerous weight gain, being short, floppiness caused by weak muscles, learning difficulties and behavioural challenges.  Diabetes is a common feature typically being diagnosed between 18-35 years. More details about Prader-Willi syndrome can be found here: https://www.nhs.uk/conditions/prader-willi-syndrome/

Prader-Willi syndrome is caused by some missing genetic material in a group of genes on chromosome number 15. This leads to a number of problems and is thought to affect part of the brain called the hypothalamus, which regulates appetite and appetite. The genetic cause happens purely by chance, and boys and girls of all ethnic backgrounds can be affected. It is extremely rare for more than 1 child to be affected in a family.

Support and information for children and adults with Prader Willi Syndrome and their families is provided by the Prader Willi Syndrome Association (PWSA).  Their helpful website is https://www.pwsa.co.uk/