It is thought that about 2,000 adults in the UK have Prader-Willi syndrome, a unique and extremely rare genetic condition caused by a defect of chromosome 15.
It occurs in around 1 in every 22,000 births and leads to a variety of mental, physical and behavioural difficulties. There is no known cure, but awareness is key.
As part of Prader-Willi syndrome awareness month, we asked some of the people we support at our Prader-Willi syndrome specialist homes to share their stories and give us an insight into what it’s like to live with the rare condition.
John - Rivers
John is a person we support at our Rivers care home in Worksop. He was diagnosed with Prader-Willi syndrome from an early age and has been dealing with the challenges of the condition ever since.
Prader-Willi syndrome affects John in several ways, but mainly by associated challenging behaviours, traits and sometimes aggression. After a number of failed placements due to this, John moved to Rivers in 2012 and hasn’t looked back.
Although John doesn’t fully understand his condition, he does understand that staff at Rivers are there to support him every step of the way to a fulfilling life, and for John, the key has been consistency.
Staff support John to maintain contact with family members, ensuring he rings them regularly and continues to enjoy visits to his brother’s house to see his nephew. This support style gives john the freedom he requires whilst providing support with his emotional and social development.
Since joining Rivers, John’s behaviour has improved dramatically and although he can still be challenging at times, staff understand him and have developed ways to overcome this alongside John – together.
Sarah – Seaview
It’s a bright and sunny afternoon at Seaview. The sun is beaming through the window and a light breeze flutters through the curtains, filling the room with warm spring air. The table is covered in paper and a rainbow of paint, glue and glitter is speckled across them. Putting the finishing touches to an elegant, hand-painted flower is Sarah, a 40 year old lady we support.
Sarah has Prader-Willi syndrome, but she doesn’t let that stop her. Living with the condition hasn’t always been easy, but she’s finally found ways to manage it, with the support of Seaview staff. Sarah says that because of her condition:
It’s important to maintain a healthy weight, to keep active and to make good decisions.
Each day that passes, she becomes more confident and independent, hoping to eventually be able to return to college to study arts, crafts and drama. And as Sarah sits creating, her mind whirring with ideas for the page, she knows she is more than just her condition and she can do anything she puts her mind to.
Claire – Landau Lodge
Claire also has Prader-Willi syndrome and her previous placements had struggled to manage the complexity of her condition. This meant she had no consistency, and an upheaval was certain around every corner. But in 2004, Claire began receiving support from Voyage Care and since then, she has made drastic improvements.
For Claire, Prader-Willi syndrome meant she had problems with her weight and maintaining a healthy balanced diet. She address these during her time at Beck Farm, reducing her weight and taking good steps towards making better food choices.
Due to her fantastic progress, in 2016 Claire moved from Beck Farm into her own bungalow at Landau Lodge, where she is able to lead a much more independent life. Claire enjoys living in this setting as it means she has developed a range of living skills that she didn’t have before.
As well as weight difficulties, Claire’s Prader-Willi syndrome also causes a number of challenging behaviours that result from an inability to deal with frustrating situations. Landau Lodge staff have worked with her to manage these behaviours better, with both staff and Claire noticing a significant change in the frequency and intensity of her behaviours.
It makes me feel angry and have tantrums. When I lived at Beck Farm I used to have about 5 blips per day. Now there are some days where I don’t have any, and other days, just one or two.
Claire now hopes to go on holiday with staff in the future and to use public transport safely without the ‘blips’ that she used to experience because of her condition.
Danielle – Red House
Danielle lived at home with her mum and younger brother until her mum began to find it difficult to cope with her behaviours. At first, Danielle moved into a residential care home by another provider but they too felt unable to manage the complexity of her condition.
Yet in September 2003, Danielle made her final move to Red House and the rest is history! Staff took time to get to know her and in doing so, have managed to find new coping mechanisms that help Danielle when she feels like she has no control.
She now has a day-to-day activities plan that keeps her motivated and active, often enjoying walks in the local area with staff. Danielle says that she doesn’t like having Prader-Willi syndrome.
It makes me very hungry sometimes and I can become upset and angry.
She also says that her only hope for the future is to say as happy as she can be.
Richard – Red House
Richard moved to Red House in 2012 shortly after his Dad sadly passed away and says he wouldn’t want to move anytime soon!
His Prader-Willi syndrome is centred on food, which is one of the most common symptoms of the condition. Richard says that this can sometimes bother him as it’s his first thought when he wakes up in the morning. He has found that when this happens though, he usually finds that resting in his room helps him to overcome it.
The staff at Red House have worked with Richard to develop other techniques too that help him to manage his Prader-Willi syndrome such as healthy eating plans and assisted cooking sessions. He says,
I like cooking and planning my meals with staff.
Although his diet is well-managed, this doesn’t mean that Richard can’t sometimes indulge in a few treats every now and then. In fact, his best advice for others is,
When you’re feeling low, chocolate makes you happy again
- and we couldn’t agree more!
Thank you to all of the people we support for their inspiring stories!