Many of us take on new diet plans and exercise regimes to achieve personal goals. But for people with Prader-Willi syndrome, it’s a key part of managing their condition.
A rare genetic condition, Prader-Willi syndrome affects around 2,000 people in the UK. Caused by a defect of Chromosome 15, it affects the part of the brain responsible for managing hormones, emotions, and appetite.
As a result of hormonal differences, individuals with the condition are unable to feel fulfilled from eating. Without the correct support, they’re at risk of unhealthy levels of overeating. Alongside affecting their physical health, being unable to control appetite can have a big impact on someone’s mental health.
With the right support, diet and exercise can become less of a worry and an enjoyable part of life. In this blog, we’ll explore the importance of diet and exercise in our specialist Prader-Willi syndrome support services.
Why is dietary management important?
People with Prader-Willi syndrome have low muscle tone, which impacts how they process the nutrients they eat.
As a result, they burn fewer calories and have a higher fat-to-muscle ratio. This increases the chance of weight gain. If food isn’t monitored, it can lead to obesity and other health issues.
A diet containing calorie-controlled foods is essential. A good range of healthy nutrients gives the body what it needs to work efficiently.
When it comes to dietary management, our specialist Prader-Willi syndrome services ensure:
- higher-calorie foods are limited, such as those that are high in sugar
- plenty of low-calorie foods and vegetables are consumed, such as broccoli and fruit
- we cook homemade foods that are lower in calories
- all our meals plans include a range of healthy carbohydrates, fats, and proteins
- water isn’t forgotten about; hydration is important
What role does exercise play?
Many people with Prader-Willi syndrome seek support to manage their weight. Often, they aspire to manage their diet and increase their activity levels. Exercise supports them to achieve their weight loss goals.
When our teams introduce new activities to the people we support, they must consider other factors of their condition. For example, low muscle tone means they have less muscle. This can reduce movement and increase the risk of injury.
Lower levels of muscle mass also reduce the amount of fat that can be burned. Increasing exercise levels can support muscle development and improve the amount of calories burned, helping with weight loss.
Strength exercises in particular help build extra muscle. They also increase bone density, which is key to a healthy body for people with Prader-Willi syndrome.
Some individuals with Prader-Willi syndrome also have diabetes as part of their condition. Exercise is a great way to improve the body’s sensitivity to insulin. Increased movement helps lower high blood sugar levels and improves diabetic control.
This knowledge is used across our specialist Prader-Willi syndrome services when incorporating exercise into our bespoke support plans. Some effective forms of exercise we use are:
- regular walks around the local area or community
- swimming, which is a lower impact exercise and easy on joints
- dancing, which is a great way to burn calories to your favourite songs
- strength exercises at the gym which is essential for building muscle
Our specialist Prader-Willi syndrome team at Barnford House, have seen first-hand the impact exercise can have. Zid, a person we support, has achieved his weight loss goals in a short space of time. He didn’t exercise before moving into the home, but now there’s no stopping him!
He regularly goes on walks, attends the gym and goes swimming with his support team. He’s now beaming with smiles and has improved both his physical and mental health.
Thriving off structure and routine
Like autistic people, people with Prader-Willi syndrome find comfort in routines. Taking a routine approach is especially effective when managing diet and exercise.
When it comes to food, building a routine around mealtimes helps reduce stress and worry. Many people with Prader-Willi syndrome will overthink about food. Knowing when their mealtimes are happening gives them comfort.
Our expert team use effective methods to structure and manager each meal plan. Some of these methods include:
- working closely with each person to understand their preferences on food choices. Most of the diet will come from healthy sources but it’s important to apply balance, making room for their favourite treats in moderation
- using activity planners so the people we support know when their mealtimes are
- creating picture charts to display upcoming meals for accessibility purposes
- applying low and high calorie days for occasions. An example was when Oliver, a person we support, went to Disneyland Paris. We knew his calories would be higher while on holiday, so we used a lower calorie week afterwards to help balance it out
Lauren at Esmer House is a perfect example of how introducing an effective structure and routine can support someone to manage their diet. Before joining us, Lauren had no structure to her meals, which led to overeating and weight gain.
Her specialist support team created a calorie-controlled meal plan for her. This enabled her to thrive on the foods she loved in a healthy way. She knew she was eating healthier and had structure to her mealtimes.
This helped Lauren improve her health and achieve her weight loss goals!
Our teams also apply the same structure to exercise. We know the people we support feel comfortable working to a routine, so we keep exercise consistent on specific days and times.
We use activity planners to write down when this occurs and work with each individual to understand what forms of exercise they prefer.
By having a structured plan, we can outline goals and help each person achieve them. A great example was how Ben, a person we support at Esmer House, increased his walking distance. Alongside Pader-Willi syndrome, he has scoliosis which impacts his breathing. We started with gentle exercise and gradually increased the distance of his walks.
By using this structured approach, Ben has improved the strength in his back and legs. This has helped him become fitter and he now freely walks to a number of places, rarely needing to use his wheelchair!
Positive effects on mental health
Research points to how diet and exercise can foster positive mental health in people with Prader-Willi syndrome.
Exercise and a healthy balanced diet have lasting effects on mood and wellbeing.
Exercising releases chemicals in the brain called endorphins, which help improve mood. They play a role in supporting people to manage ongoing mental struggles, such as anxiety and depression.
Likewise, the food we choose has similar benefits on the brain. Eating healthy options improves cognitive functions – our processes of thinking and responding – and emotional regulation.
Anxiety and other challenging behaviours often arise due to the overthinking of food. The inability to feel fulfilled from eating in Prader-Willi syndrome, often leads to someone overthinking and quickly seeking their next meal.
With such a focus on food, we shape our support to help individuals manage this. We work closely with them to help them understand their condition. By explaining the effects of overeating, the individual can gain an easier understanding of why their meals must be structured.
We limit access to food, which keeps the individual safe and helps the brain process that food isn’t available, helping to reduce anxiety.
Applying balance also supports good mental health. The people we support can still enjoy their favourite treats in moderation. This ensures they never feel like certain foods are removed from their meal plans.
Our recent blog post dives deeper into this subject.
Specialist Prader-Willi syndrome support
Within the Prader-Willi syndrome community, diet and exercise improves health, happiness and independence.
Just like people without Prader-Willi syndrome, the people we support find comfort and joy in food but have biological differences that create challenges around their appetite and eating.
With our specialist support, individuals with Prader-Willi syndrome are empowered to nurture a healthy relationship with food, engage in exciting activities, and live fulfilling lives!
To read more on our specialist Prader-Willi syndrome support, visit our website!
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