PRADER
WILLI SYNDROMEImagine
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鈥檛 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鈥檚 younger sister and a is a sufferer of Prader Willi
Syndrome. Her condition wasn鈥檛 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-inThe
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鈥檓 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鈥檚 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. | 
听听Inside Out - East Midlands: Monday 14th October, 2002
