23rd July 2025
Jane* is in her late 20s. She is autistic and has Prader-Willi syndrome.
In her early 20s, Jane spent a year in an Assessment and Treatment Unit (ATU.) During this time food was a massive motivator for her; one of the symptoms of Prader-Willi is overeating. When Jane moved into supported living she had gained seven stone in just over a year.
Jane’s support team helped her to want to live better. A dietician worked with Jane to create a four week rolling menu of three nutritious meals and a snack a day.
Jane chooses her menu with her dietician, so she has control over what she will be eating. Her favourite meals are sea bass, chicken kebabs and chilli. Once a month she has a takeaway, usually ribs, as a treat.
Twice a year the menu is changed. This is also Jane’s choice as she likes routine and to know what she will be eating. Jane is now a healthy weight.
It isn’t exercise. It is having fun!
Alongside the healthy diet, the team encouraged her to try more exercise. Previously Jane didn’t have much energy and couldn’t walk far but with the right support, Jane was soon attending four different exercise groups each week: bowling, Zumba, tandem cycling, climbing, weights and even a bucking bronco. All of which Jane was enjoying, making friends and keeping fit, having control and choice over her food.
Following all these positive steps forward, Jane became far less distressed in daily life, meaning that the team could support her to improve her home. For example they hung new curtains; where previously the curtains were attached to the walls by Velcro, they are now on a pole.
Maintaining a lifestyle during lockdown
When lockdown arrived and Jane had to shield, her life changed immediately. The team were concerned about how such a dramatic change would affect Jane as she lost much of the independence she enjoyed.
By focusing on what she could still do, Jane filled her life with new activities: daily walks and the purchase of a trampoline replaced her exercise groups. Evenings spent with her family continued but on Zoom.
She’s acquired new skills learning how to clean and maintain her flat, growing her own food. Becoming healthier has created a love of cooking for Jane. She’s participated in online cooking competitions and talent shows. These gave Jane something to look forward to and soon her days were filled once more. Most importantly for her, she’s maintained her weight and fitness.
Recently Jane became a Quality Checker for Dimensions, helping the organisation recruit and train great colleagues and checking the quality of our support. She’s even acquired her first pet, a hamster, which she is proud of.
Just a few years ago Jane was at risk of life changing ill health, now she’s reduced her risk of diabetes and heart disease and lives a fulfilled, active, employed life. Jane has truly turned her life around.
*Names and images have been changed
Consistency is the key
- Jane’s team all understand the nuances of Prader-Willi syndrome
- Jane can tell you on any day what she will be eating.
- The team never use the terms diet or exercise, instead Jane is eating healthily and being active.
- And, aware of the power of role modelling, her support worker will try to eat the same lunch and join in with her activities.
Eat proper food and go swimming! Being healthier means I can do more stuff!
Jane