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.Well, there it is, ladies and gentlemen: the secret to eradicating childhood obesity. Let the "disordered-eating-for-life games" begin!
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]
Came across "Killer at Large", a documentary, on streaming video...
ReplyDeleteWhile it started out sensationalistic (12 yr old girl has liposuction!), there were some good points made, wound up being fairly balanced overall.
What stuck w/me was the discussion early on, that over the eons our genetics have selected those individuals w/the BEST fat-storing capacities; we are built for feast & famine but these days of course, it's "FEAST" 24/7. Who wouldn't gain weight?
It's absolutely ridiculous for MO to focus on "the exception", a genetically disordered child, when we have entire CONTINENTS filled w/"the rules"!
Awesome post, NewME!!!!
ReplyDeleteGiving her the benefit of the doubt, maybe MO will exploit, er, use the family to help show the difference between behaviors that would help children to develop healthy and relaxed attitudes towards eating vs. helping them to develop pathological, obsessive-compulsive, ritualistic, and self-punitive attitudes towards eating.
But that outcome seems doubtful. :)
On the other hand, taking off from your last blog entry about "assumptions", maybe we should not assume that MO does not have untreated disordered eating or even a full-blown eating disorder, which she could be in denial about, and which might help to explain a lot more regarding why she "really really doesn't get it" in spite of her highly educated status.
ReplyDeletePrincess Diana, recall, was tall and thin and statuesque, she routinely exercised at a gym, and she suffered from a serious eating disorder, which probably would have gone unnoticed by most everyone in the general public (and perhaps would have remained a secret from even her closest family members) if various circumstances hadn't resulted in her decision to talk about her serious health problem with members of the media. Betty Ford was drinking to alcoholic standards, according to her own testimony, while living in the White House--and her problem was not made public until much later, bless her.
MO lives as a highly privileged woman, too, with resources that typical Americans do not have (even before she became First Lady), including affordable health care, access to the most helpful nutrition advisers, and easy access to nutritious food in adequate quantities for herself and her family members. (Hey, I watched "The West Wing", LOL).
She has also selected an example family from Canada, rather than the U.S., which additionally skews her perspective on what is realistic and possible sources of help for families. Does she even BEGIN TO REALIZE, for instance, the differences in health care coverage between Canadian families and U.S families? The reduced/increased stress levels alone (from having/not having to worry endlessly about medical bills) can have a major impact on people's health--including on their "physical fitness" and weight as these issues relate to chronic stress, chronic sleep deprivation, inadequate access to psychological help when needed, and over reliance on cheap starchy foods, etc.
The Canadian family can consult experts, professionals and specialists to provide whatever assistance is required (including helpful physical therapy, acupuncture, nutrition counselling, family therapy, behavior modification, medication, etc) to help with the management of their child's pathological eating behaviors and disease symptoms. Families in the U.S., even when (supposedly) "fully insured," often still cannot afford the health care expertise that Canadian families receive without worrying endlessly about medical bills vs. housing, or medical bills vs. nutritious food, or medical bills vs. everything else.
Wish we could have a LONG talk with Mrs. O! Don't know if that would do any good, but what a potentially interesting discussion.
Great points HaF! Had to take a friend to the ER last night for some "palliative care" - she was at the end of her rope, dealing w/GI issues which undoubtedly are postsurgical complications related to gastric bypass & "revision" surgery...
ReplyDeleteOur healthcare system remains so badly broken I don't even know where to begin, but it is TRAGIC that a 66-yr old woman suffering permanent disability in part through her attempts to comply w/obesity-control standards (I refuse to dignify those procedures by connecting them in any way, shape, or form to "health") cannot secure basic health care needs for herself without having to wait for hours & hours being belittled & humiliated by overworked ER personnel.
@Val: Your friend's experience is profoundly moving and sad, and represents an all too common tragedy, an individual's courageous attempt to improve her existence by conforming to social pressures that come with a heavy price and with completely inadequate support---leaving her worse off than before...and still suffering from social stigma. The ER personnel described by you are also trapped in a distorted paradigm of faux "health care", for the conditions in which they are expected to help others are perverse---conditions in which they are prevented at every turn from actually helping and healing. The conditions create a terrible dilemma, not unlike that of your friend, whereby in order to survive and try to plan for a better future for themselves, they are forced to take actions that inevitably degrade and dehumanize others. They suffer too, even as they "belittle and humiliate" the people who turn to them for care. Thanks for sharing her story. She is lucky to have a friend like you who understands that her life matters.
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