PWS REVISITED

Laetitia's progress since the last programme has allowed her to fulfil her Parisian dream

Read the original story

Two years ago Inside Out met a woman who was in danger of literally eating herself to death - not because of greed, but because of a rare genetic disorder.

Laetitia Brown has Prader-Willi Syndrome (PWS) which meant that she had to move from her home and into a specialist care facility to face her difficulties.

Now we're catching up with Laetitia and her family to see how she's getting on.

Imagine eating a three course meal but never feeling full.

This is how it feels to those living with the genetic condition Prader-Willi Syndrome (PWS), where in extreme cases, they can quite literally eat themselves to death.

The disorder was discovered in 1956 by three Swiss doctors - Prader, Labhart and Willi.

Their research found that people with PWS have a flaw in their hypothalamus, which is the part of the brain responsible for regulating hunger.

This is due to an error in the chromosome development process, which occurs when a child is in the womb.

The syndrome affects one in every 16,000 people and symptoms include an insatiable appetite, poor muscle tone and severe learning difficulties.

It is now the most common known cause for morbid obesity - and there is no cure.

Time for action

Laetitia's mother first noticed the symptoms when Laetitia was six

Back in 2003 Inside Out met Laetitia Brown, who had recently been rushed into hospital with serious complications as a result of the disorder.

It was then that she needed to make a very big decision - to move out of her family home and into specialist care.

Her sister, former Holby City actress Colette Brown, takes a look back at the story. She recalls:

"Two years ago my sister Laetitia was facing a huge challenge.

"She needed to radically change her life - her weight was spiralling out of control and she desperately needed help.

"So she took the brave step and moved here to Kettering and went to live in a home specially dedicated to people with PWS."

Laetitia's family had been coping with her disorder for years, but when we first met Laetitia she weighed over 26 stone and could barely walk.

Laetitia's mum explains, "I think her obesity started when she was about six.

"We would go to friends and she'd go into the cupboards and take biscuits and things."

And Colette remembers how long it was before they had an explanation for Laetitia's growing weight.

She says, "Looking back it's incredible to think that my sister's genetic condition wasn't diagnosed for 20 years."

Laetitia herself soon realised that she needed to do something before things really got out of hand. She explains:

"I was desperate to lose weight, to make things easier.

"When I was in hospital I thought that was it for me.

"I never thought coming out of hospital that it would change."

A step in the right direction

Laetitia must follow a controlled diet

Having considered every other option - from surgery to live-in care - Laetitia decided to move in to a Gretton Care Home, which specialises in caring for PWS patients.

Colette was there to help her settle in.

She recalls, "I remember how difficult it was leaving Laetitia here and wondering what the future held for her.

"It was a big step moving away from home for the first time and we didn't know how she would cope."

Laetitia has now lived in the care home for two years, where her condition is strictly controlled.

She is only allowed 1,200 calories a day - much less than the average person - and food is kept under lock and key.

Residents are also taught how to prepare food properly and to understand why they have to regulate their diets.

As we meet Laetitia now for the first time since she moved into the home, it's clear to see what a difference it has made to her condition.

She has lost weight - 12 stone to be exact - and has gained the confidence to start going out.

Leaps and bounds

Laetitia is reunited with her father

Looking back at the tape of Inside Out's first film two years ago, Laetitia can't believe how much has changed.

"It really shocks me to see the tape - I can't believe it was me."

Laetitia's dramatic weight loss and stabilised condition means that she can finally fulfil her dream - to visit her father, who lives in Paris.

And he's amazed at the difference just a couple of years can make.

He says, "It is an enormous improvement - she's lost loads of weight.

"More importantly she's motivated to lose weight - it's not just a question of diet, it's a question of mental attitude."

Thanks to the care she receives at the Gretton Home, Laetitia is positive about the future, and she has a message for others living with the same condition. She says:

"You can do it, you can get there eventually. It takes time but it can happen."