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Always hungry - life with Prader-Willi syndrome
4:00pm Tuesday 31st December 2013 in News
LOCKED cupboards and a village on alert, very little can be left to chance with Prader- Willi syndrome.
The rare genetic condition causes a wide range of symptoms, most notably a constant desire to eat, driven by a permanent feeling of hunger.
Among those battling the condition is 42-year-old Richard Leathlean.
His mum Debbie has spoken about the challenges she continues to face.
She said: “The main thing is the part of your brain that tells you you’re full up doesn’t work, so he basically thinks he’s starved all the time.
“He could eat a four-course meal and still think he’s hungry because his appetite is never satisfied.
“In the early days he had no concept of what food even was, so we’d find him trying to eat wallpaper, cat food, coal, everything.
“And if he couldn’t get anything at home then he’d raid dustbins.”
Very little advice was available when Richard was young.
Debbie and Richard’s father Roger, who separated ten years ago, were only given a diagnosis when he was nine.
Debbie, 70, admitted they had “never heard of it”.
She said: “Not very much was known about it at all, so we didn’t really get a lot of help and we just battled through doing what we thought was best.”
As food became an obvious problem, the fridge and kitchen cupboards were locked up and remain so today.
Richard also has to be kept under close supervision.
Debbie, of West Drive, Wethersfield, near Braintree, said: “He’s quite happy to go up to somebody in the street and say ‘Have you got fish and chips there?’ or if he sees someone with chocolates he’ll go up and say ‘Can I have one?’ and they’ll hand over half a dozen because they think they’re being kind.
“Sometimes his weight has gone up and I’ve thought ‘Why?
He’s not getting any more food at home, he’s not getting any more at work’ and then I have to be a detective and stitch the source up.”
To help manage his weight, Richard is also weighed once a month at Freshwell Health Centre in Finchingfield and Debbie has developed a number of tricks.
She added: “He can only have 600 or 700 calories a day which is nothing, but I’ve learned how to make a salad and a little bit of meat look huge.”
But as well as his hunger, the condition also affects other aspects of Richard’s life.
At his heaviest, the former Edith Borthwick pupil weighed 18 stone, but he is also short, at just 4ft 9ins tall, and has small hands and feet, which make him prone to falling over.
He also has learning difficulties, needs lots of sleep and can have a bad temper, partly through frustration because of the constant hunger he feels.
Debbie added: “It’s a bundle of the most unfortunate things really. Part of it is obsessive– compulsive disorder, so if he has a basin of water it’s got to be full to the brim and if he uses talcum powder he uses almost a whole carton. Everything is to excess. He can be very loving, but a temper tantrum will come quickly so you have to be very aware something you’re saying or doing could produce a tantrum.
“He’s also got a very high pain threshold, which can be very difficult because he can stick himself in a boiling hot bath or shower and not realise.”
Richard cannot tell the time or use a mobile phone so, while in Wethersfield, stays in contact with Debbie by using a walkietalkie.
She said: “It’s 24/7, but because we live in a village I know he’s safe and people are looking out for him.
“Everybody knows him, so he can go to the Post Office and they won’t sell him chocolates.
“They all really watch out for him, which is brilliant for me.”
Brothers Derek, 44, Gavin, 39, and Ryan, 36, who live in the Braintree area, also play their part.
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