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 of 2020. Since living here, she has achieved many goals such as losing 3 stone and being able to self-administer her medication. Here we revisit her journey.
Prader-Willi syndrome explained
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 the brain in many ways. It has a significant impact on the mental, physical and behavioural well-being of those diagnosed. Prader-Willi syndrome is most commonly associated with an excessive appetite and overeating, as well as weight gain and lack of muscle tone. The syndrome only affects approximately 2000 adults in the UK.
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 binge eating. 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 ten years. Lauren preferred having a bath instead of a shower, but due to her health she hadn’t been able to have a bath. Staff knew they had to support her back to health after her two incidents with binge eating and drinking.
One of the first steps staff 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 main goal was to lose weight, which meant working on her diet. Esmer House staff are very cautious with locking cupboard doors and fridges. Prader-Willi syndrome can often cause a loss of control with overeating. Ensuring everything edible is out of reach keeps the residents from binging, and in-turn keeps them safe.
Staff work hard to create a happy and healthy environment around meal time, ensuring everything is well-structured. Keeping mealtimes well-structured supports the residents with staying on track with their healthy eating. The residents are aware how important good nutrition is and enjoy getting involved in planning meals.
“We have a low-calorie day, a high calorie day and a medium calorie day. Our plans are calorie controlled, allowing everyone to have a mix of different foods,” Morgan, Deputy Manager at Esmer House, told us. “We worked with Lauren to ensure she was eating the right portions and types of foods. This allowed her to still have her favourite treats, just in moderation.”
“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 tells us.
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 am able to 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. 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. While working on this goal staff explained what the consequences would be if Lauren took too many of her tablets, like her glucose tablets. She understood this would mean not having some of the things she enjoyed, and the overall goal was to keep her safe. Because of this, Lauren 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.”
Positive risk taking
When it was safe to do so, staff worked with Lauren on positive risk taking. Lauren loves her independence and enjoys going to the pub to visit her friends. Staff supported her to travel to and from the pub via bus by herself. They also purchased her a mobile phone, so she can call if she needs any help.
Unfortunately, due to the pandemic, Lauren is unable to practice her independence by riding the bus to the pub by herself at the moment. Staff have combated this by creating a pub in the service’s back garden cabin. The pub is complete with furniture, a bar pump and dart board for all residents to enjoy! Lauren loves being able to visit Esmer House’s pub during lockdown.
Achieving her goals
In the year that Lauren has lived at Esmer House, she’s managed to achieve her main goals. She has lost an amazing three stone – a massive achievement for someone with Prader-Willi syndrome and diabetes.
Because of this weight loss, she was able to improve her mobility and have baths regularly again. Lauren’s very excited about being able to have baths again, she told us, “Morgan and Alex helped me purchase a bath chair that has been installed for me. Now I can easily get in and out the bath when I want one. I love buying bath bombs and nice smelly bath soaks. I even got myself a new dressing gown ready for when I get out!”
Her final goal was to be able to self-administer her medication, and with support from staff, she can now do this too.
Her next goal is a fun one. Lauren loves animals and wants to go on an African safari. She still has a way to go due to her cellulitis, but staff are working with Lauren and her doctor to ensure she’s healthy and fit to fly when it’s safe to do so. They hope to take her on holiday one day soon!
A changed life for the better
Laurens life really has changed for the better at Esmer House. If you’re interested in how we can support yourself, a loved one or a client to live their best healthy lives, please fill in this quick enquiry form and a member of our team will get back to you.
Learn more about Esmer House
If you’d like to learn more about Esmer House, take a look at our other stories!
- Life around the dining table at Esmer House – A podcast where staff share how they’ve created a happy, healthy home for the people we support, surrounding the dining table.
- Esmer House in conversation – Podcast snippets from Service Manager, Alex, discussing what measures they’ve put in place for the residents and the journey to opening the service in January of 2020.
- Open day success for Esmer House – A news story about when Esmer House first opened it’s doors!
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