PRADER WILLI SYNDROME

Imagine eating a meal, but never feeling satisfied.

This is how it feels to sufferers of the genetic condition Prader Willi Syndrome (PWS), where in extreme cases, the sufferer can quite literally eat themselves to death.

PWS was first discovered in 1956 by three Swiss Doctors, Prader, Labhart and Willi. Symptoms include an insatiable appetite, poor muscle tone and difficulties with reading and writing.

A genetic syndrome

"It is a genetic syndrome. They don’t lose the feeling of hunger that you or I would lose when we eat."

Tony Holland, Cambridge Psychologist

It is estimated that the condition effects one in every 16,000 people. PWS occurs when chromosomes are developing. A vital piece of genetic information goes missing from chromosome 15 and Prader Willi syndrome is the result.

Holby City actress Colette Brown, patron of the PWS Association, takes Inside Out to meet a very special person who suffers from the condition - her sister.

Laetitia is Colette’s younger sister and a is a sufferer of Prader Willi Syndrome. Her condition wasn’t diagnosed for over 20 years.

Controlling eating

Laetitia's condition was undiagnosed for 20 years

After being admitted to hospital weighing more than 26 stone, Laetitia decided to go into care to get her eating under control.

Gretton Homes are specifically designed to care for people with PWS. Residents stick to a strict calorie controlled diet and except at meal times, the kitchen door remains locked.

In extreme cases, it has been known for sufferers to go searching in bins for food, so at Gretton homes all left-overs are placed in the waste disposal.

Calorie controlled diet

"These people live to eat. They appear to have an insatiable appetite and in some cases they can actually die from their obesity."

Tony Holland, Cambridge Psychologist

At Gretton Homes, residents eat a balanced diet of 1,200 calories per day.

A typical day's food at Gretton, looks something like this.

Breakfast: Bran cereal and one slice of wholemeal toast
Lunch: Prawn salad pitta bread. A low fat yogurt and apple for desert.
Tea: Vegetable curry with boiled rice and broccoli. Low fat mousse for desert.
Supper: Low fat hot chocolate and two plain biscuits.

Weigh-in

The diet may be strict, but the results speak for themselves.

"When I first went to the gym I cried because it was very difficult. I’m desperate to lose weight."

Laetitia Brown

In four weeks, Laetitia has lost two stone, the equivalent of 24 bags of sugar. Her success is not only down to the strict eating regime, but also Laetitia’s dedication in the gym.

Laetitia is already feeling the benefits of weight loss and with the support of her family and carers, she will hopefully go on to achieve a healthy weight.