Prader-Willi syndrome How Esmer House has changed Lauren’s life for the better
Lauren moved to Esmer House, our specialist Prader-Willi syndrome service in January 2020. Since living here, she has achieved many goals, improving both her physical and mental wellbeing!
Lauren has Prader-Willi syndrome and diabetes. Prader-Willi syndrome is a very rare genetic condition, caused by a defect of chromosome 15 and affects an individual in many ways. It has a significant impact on a person’s mental, physical, and behavioural wellbeing. Prader-Willi syndrome is most associated with an excessive appetite and overeating, as well as weight gain and lack of muscle tone. The syndrome affects approximately 2,000 adults in the UK.
With support from our dedicated team, Lauren has grown her confidence, and successfully lost a significant amount of weight, resulting in improved health and better managed diabetes. Lauren can now also self-administer her own medication!
First steps to changing Lauren’s life for the better
Before moving to Esmer House, our specialist Prader-Willi syndrome service in Mansfield, Lauren was living in a supported living property. This environment wasn’t right for her, and she was admitted to a critical care ward twice due to overeating. Her Social Worker decided a more controlled environment would be better suited, and Lauren was the first person to move into Esmer House when it opened in January 2020.
When Lauren arrived at Esmer House she was in poor health, overweight, suffered from low mobility, pain and hadn’t had a bath in over 10 years. She preferred having a bath instead of a shower, but due to her health she hadn’t been able to enjoy one.
One of the first steps our support team took was supporting Lauren to sleep without bed rails. The team helped her understand she had enough mobility to sleep without them. This allowed her to independently get up to use the toilet in the night.
Good nutrition in a happy, healthy home
Lauren’s primary goal was to lose weight, which meant working on her diet. By controlling access to food at Esmer House, our team could better manage Lauren’s food intake, preventing overeating and supporting a balanced diet.
The team work hard to create a happy and healthy environment around mealtimes, ensuring everything is well-structured. Keeping mealtimes structured supports Lauren to stay on track with her healthy eating.
“We have a low-calorie day, a high-calorie day and a medium-calorie day. Our plans are calorie controlled, allowing Lauren to have a mix of different foods. We work with Lauren to ensure she was eating the right portions and types of foods. This allows her to still have her favourite treats, just in moderation.” Morgan, Manager at Esmer House.
“When I moved to Esmer House, I changed my diet to a healthier and more consistent one. I was encouraged to eat more fruit and vegetables because they knew what was healthy and beneficial to me.” Lauren said.
Noticing a huge difference
After implementing a change in her diet, Lauren noticed a difference. She was losing weight, and her mobility was improving, allowing her to go out for walks. The pain caused by her low mobility had calmed, and she no longer needs eight painkillers a day. She’s now able to walk up and down steps by herself, something she couldn’t do before losing weight.
Lauren told us how she feels now she’s lost some weight, “I feel better now I have lost weight. I can do more day-to-day things without it being a struggle. I’m also enjoying being more stylish with my clothes because I feel more comfortable!” Another benefit to changing her diet is how it has affected her diabetes. For 11 years, Lauren had been on the same amount of insulin. Since losing the weight and implementing exercise, she’s had her insulin dropped twice and now uses a Libre device to manage her diabetes and track her sugar levels. This is a huge achievement!
Understanding the consequences
After seeing how much progress she had made, the team began working on her second goal. This was to be able to have her medication in her room and administer it herself.
Our support team helped Lauren understand how to take her medication safely, so that she doesn’t overdose on her glucose tablets – otherwise she would not be able to enjoy certain foods or drinks. Lauren also needed to keep her medication with her, so she now keeps her medication in her room and takes it safely by herself.
Lauren says that being able to take her medication herself makes her feel much more independent. She told us, “Having my medication stored in my own room is good. It means I’m doing them myself and I don’t have to be reliant on other people. I know myself what I need to take.”
Achieving her goals
In the time that Lauren has lived at Esmer House, she’s managed to achieve her main goals. She has lost an amazing amount of weight which is a massive achievement for someone with Prader-Willi syndrome and diabetes.
Because of this weight loss, she has improved her mobility can now enjoy regular baths. She said, “My support team helped me purchase a bath chair that has now been installed for me, supporting me to easily get in and out the bath when I want one!”
One of her goals was to be able to self-administer her medication, and with support from the team, she can now do this!
Our team supported Lauren to get a passport and take her on an abroad trip – something Lauren has always wanted to experience! Lauren has recently been to Fuerteventura where she explored the local area and even went on a submarine. She is looking forward to going to Turkey for her next abroad holiday with our team’s support – making memories that will last a lifetime!
Now she’s got the travel bug, Lauren’s thinking about where she can visit next! With a huge love of animals, top of her list is experiencing a real African safari. Lauren is also excited to start her new volunteering adventure – dog walking and making dog treats! This hobby will help increase Lauren’s confidence and improve her social skills even further.
Lauren has made such amazing progress since living at Esmer House! There’s no stopping her now, and we can’t wait to see what she achieves next.
Learn more about our specialist care and support
To find out more about our specialist Prader-Willi syndrome support and how we can help you, a loved one, or a client, fill out our simple enquiry form and a member of our team will be in touch.
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