Prader-Willi Syndrome is a rare genetic disorder. One of its most disturbing symptoms is the complete inability to feel satiety. People with Prader-Willi are
always hungry. Those who have this syndrome are born with it and there is currently no cure.
According to Wikipedia, other symptoms include "low muscle tone, short stature, incomplete sexual development, cognitive disabilities, and problem behaviors". Low muscle tone means that engaging in physical activity is more difficult and less productive, although now PW children are treated with growth hormones, which improves their muscle tone.
But what does Prader-Willi syndrome have to do with Michelle Obama?
Well, as we know, Mrs. Obama is leading a crusade to eliminate childhood obesity. So who are some of the experts she has called upon to help her slay the obesity dragon? Why a couple who have a child with PWS, of course!
Tanya and Keegan Johnson are travelling from Etobicoke, a suburb of Toronto, to Washington to help Mrs. Obama out. Here's a quote from a recent Toronto Star article on the family's upcoming visit to Washington:
"If you can keep a child with Prader-Willi at a healthy, thin weight, then you can keep anyone thin [my emphasis]. We have the answers to obesity," [Mrs. Johnson] said. "We feel strongly that we have a lot to offer Michelle Obama and her team."
Here's a picture of the Johnson family:
Though it shows very little of their bodies, the parents both appear to be slim, as are their two children (one with PWS, one without). I would be curious to know whether either parent has ever had issues with keeping his/her weight at a "thin, healthy" level (to quote Mrs. Johnson).
Please don't get me wrong: I'm sure the Johnsons are brave parents and totally dedicated to their child. Dealing with a PW child must be incredibly difficult. I just seriously doubt that they have any real understanding of the complexity of childhood obesity for children who do not have PWS.
Under "Dietary Management" on the International Prader-Willi Organization's site, it says the following:
The vast majority of people with PWS show excessive eating behaviours
including stealing food, stealing money in order to buy food, taking
food from others, breaking locks on cupboards, and so on. They often
display an extraordinary ability to find food and just when you thought
it was safe to leave the room for a few moments, you'll return to find
something missing! Added to this is an inability to reason bewteen right
and wrong when it comes to food-seeking, and you have the makings of
some serious behavioural challenges.
Unfortunately it is also very easy for people with PWS to gain
weight, due to the combination of the overriding desire to eat, coupled
with the low muscle tone (if growth hormone has not been used) which
makes exercising difficult, slow, and therefore no fun. Therefore
managing weight gain in PWS becomes even more critical.
Management also means locks on pantries, fridges, food cupboards -
not straight away, but when food-seeking becomes apparent. Although this
might seem antiquated and unfair, it is incredibly helpful to the
person with PWS to know that food is secure and is not a temptation to
them. [my emphasis]
Well, there it is, ladies and gentlemen: the secret to eradicating childhood obesity. Let the "disordered-eating-for-life games" begin!
