How our specialist Prader-Willi syndrome support empowers people to live their best lives!

Specialist Prader-Willi syndrome support

Approximately 2000* people in the UK, live with a rare genetic condition called Prader-Willi syndrome.

Prader-Willi syndrome has a significant impact on a person’s mental, physical, and behavioural wellbeing. Many people with the condition can develop complex needs, including learning disabilities, physical symptoms, and behavioural problems.

We caught up with Lucy Harrop, Deputy Service Manager at Mason House, and Morgan-Jo Murray, Service Manager at Esmer House, to learn more about Prader-Willi syndrome and how we provide specialist support, tailored to the condition.

What causes Prader-Willi syndrome?

Lucy: Prader-Willi syndrome is caused by a defect of Chromosome 15 – which manages the part of the brain controlling appetite, managing hormones and helping to regulate emotions.

People who have Prader-Willi syndrome will struggle to feel full and spend a lot of time thinking about food. In some instances, someone with the condition will even turn to non-edible foods to satisfy a craving. 

Without a support team helping them to manage their food intake, exercise regime and daily wellbeing, excessive overeating would occur, leading to rapid weight gain and associated health conditions.

Due to the part of the brain affected by the chromosome defect, Prader-Willi syndrome is also commonly associated with learning disabilities and challenging behaviour, weak muscle tone, restricted growth, and hormonal complications.  

How does Prader-Willi syndrome impact someone’s life?

Morgan: Food management is one of the biggest impacts we see with people who have Prader-Willi syndrome. It’s difficult for many people to understand why their food must be monitored and calorie controlled every day.

We often see high levels of anxiety linked to food. People with the condition will think about food for large amounts of time, leading to anxious thoughts about when their next meal will be ready.

When we take the people we support out into the community, we’re sometimes faced with challenges around food there too. Prader-Willi syndrome is such a rare condition, that many people who aren’t familiar with it, will be unaware of what it is and the issues it can cause.

When we’re out in the community, the people we support might come across food tasting in the shops. It’s difficult to explain why they can’t try different foods like other members of the public can. Having just one or two food items that haven’t been accounted for in their meal plan can have a large impact on their health – it all adds up.

Lucy: Weak muscle tone also has a big impact on someone with Prader-Willi syndrome. This affects how easily someone can move and exercise.

People with Prader-Willi syndrome might be less mobile and find exercise more challenging than someone who doesn’t have the condition.

Behavioural challenges are another common symptom of Prader-Willi syndrome. These can lead to emotional outbursts and episodes of anger and irritability, as well as stubbornness, and repetitive behaviours such as skin picking

How do we ensure people with Prader-Willi syndrome eat a balanced diet?

Morgan: A person with Prader-Willi syndrome will require a lot of structure to their diet. We create calorie-controlled meal plans, paying close attention to the types of foods we include, ensuring the people we support get all the nutrients they need.

Our specialist teams create fun recipes that are carefully calculated, ensuring they contain the right number of calories for each person.

Since food has emotional ties to everyone, incorporating someone’s favourite treats – in moderation – does wonders for their mental wellbeing. We ensure each person we support gets the opportunity to enjoy the foods they love!

We also seek out healthier versions of tasty treats. This could be a lower calorie curry, or a healthier hot chocolate.

What is the mental impact on someone with Prader-Willi syndrome?

Morgan: We often see people with Prader-Willi syndrome developing mental health conditions, such as depression or anxiety.

Quote from Service Manager at Esmer House, Morgan-Jo Murray

Other challenges that can occur often relate back to food. Getting someone comfortable with structure around their meals won’t happen overnight. It may take someone with Prader-Willi syndrome more time to adjust.

If someone struggles to understand why they can’t eat certain foods, this can lead to increased anxiety and mental health struggles.

For people with Prader-Willi syndrome, a daily routine is a wonderful way to improve their mental health – especially around concerns about food. They find comfort in routine and patterns, especially knowing when they’ll be eating and what tasty foods they’ll be enjoying!

It’s essential to stick to a routine the best you can. A slight change, such as a swapping out meals, can have a big impact on that person. They can interpret it as having food taken away from them, often leading to intense emotional distress.

Building meaningful relationships with other people that have the condition can also improve mental wellbeing. From experience, we’ve seen people we support gain great comfort from living with other people who are on the same journey as them.

How important is exercise for someone with Prader-Willi syndrome?

Morgan: Exercise is important when supporting people with Prader-Willi syndrome. One of the symptoms of the condition is developing high levels of fat tissue. This means it can be harder for them to burn fat, and easier for them to gain weight.

It’s essential they incorporate regular exercise into their routines, such as walking, swimming, and even strength exercises in the gym. This helps them burn extra calories and maintain a healthy body weight.

Taking part in exercise also improves the body’s sensitivity to insulin. For people with Prader-Willi syndrome who have diabetes, this is particularly important as the increased insulin will lower high blood sugar.

Exercise also does wonders for improving mood! I’ve experienced many cases where someone will feel downbeat… but the moment they leave the gym, they’re a different person!

Completing a workout gives them a sense of accomplishment and provides them some relief from focusing on food. Giving the people we support an incentive to exercise helps them stay motivated to do it. Fun trips out, such as going to the cinema or shops, are some of the activities the people we support enjoy doing.

What is so unique about supporting people with Prader-Willi syndrome?

Lucy: Prader-Willi support is unique because of how food is managed. Food is placed out of access, and the kitchen isn’t open for unsupervised use.

This takes away any risk of people with Prader-Willi syndrome accessing food that isn’t included within their calorie-controlled meal plans. In other specialist services such as autism, or learning disabilities, this wouldn’t be the case, and food would be easily accessible.

Morgan: Most people living at one of our Prader-Willi syndrome specialist services, have full capacity. This means they understand everything their support team are telling them. They’ll be involved in decision making and can communicate clearly to their team what goals they want to achieve or what activities they want to do.

How do we deliver person-centred care to people with Prader-Willi syndrome?

Lucy: We work closely with the individual to understand their goals and aspirations. Our team find out what they enjoy doing, places they like to go, and what their specific needs are.

We then put together a person-centred care plan tailored to that individual, arrange monthly team meetings and regularly catch up with each person we support to review their progress.

If they need any additional support, we adapt our approach to help them achieve their goals.

Quote from Deputy Service Manager at Mason House, Lucy Harrop

Morgan: Every decision we make is person-centred to each individual we support. Even though their food is restricted, we work closely with them to ensure they’re comfortable with their meal plans – giving them opportunities to enjoy their favourite foods in moderation during special occasions.   

Prader-Willi syndrome doesn’t stop people living fulfilling lives!

We’re dedicated to providing a safe and positive environment for people with Prader-Willi syndrome. Across all our specialist Prader-Willi syndrome services, we’ve experienced some amazing outcomes with the people we support.

Martin and Charlotte, are just some of the people that have accomplished their goals, and are living their best lives! 

Find specialist support near you!

To find out more about our specialist Prader-Willi syndrome support and how we can help you, a client, or a loved one, fill out our quick form and a member of the team will get back to you.

*Figure taken from PWSA.

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