Prader–Willi syndrome, or PWS, is an extremely rare disorder caused by the damage or deletion of chromosome 15, causing the sufferer to have low muscle tone, a plethora of physical abnormalities (morbid obesity usually being the most pronounced), causing not just loads of physical pain, but also subjection to public ridicule. They almost always have slow cognitive development (though usually not low enough to classify as mental retardation). And the most popular symptom of PWS is of course unappeasable hunger pains.
So... I find this particular documentary confusing. If a
person knows that eating, no matter how much or how little, is not going to
quell or even put a small dent on their appetite, why do they desire so badly
to do it? I myself am an addict with five years of sobriety. The first couple
of years I took a drug each morning called naloxone, which blocks the
comforting effects of opioids and alcohol. I would never seek them out because
I knew that no matter how much of them I consumed, I would not receive an iota
of comfort or euphoria.
The documentaries (such as the one posted above) and
literature on this disease (ICD-10; American Journal of Medicine, June
1972 issue) say there is absolutely nothing a suffer can do to regulate their
hunger pains. In this documentary @ 40:56 the sweet PWS sufferer Katie reveals
to the cameras her nasty side. She is placed in a halfway house for PWS suffers
for one night, and with her voice slightly higher and more assertive, complains
that her dinner was not big enough, and if she could only be given a little
more food she would feel ok and not be a pill to her temporary housemates and
caregivers. She is repeatedly denied, escalating her vociferating into full-out
squalling. One would think she knows by now that food does not satiate her
appetite. It does not make her feel better. Not even a bit. Additional food is
empty calories that does nothing but further her health problems. She must know
this! Then @ 41:15 the narrator says Katie's hunger pains are getting worse,
which I feel contradicts the definition of PWS given in this documentary and in
medical literature. So, does that mean she and other people with PWS can quell their hunger a little bit? That means her
hunger level are not constant and can be lowered, as obviously her more extreme pains
such as the ones experienced during her stay at the halfway house, did get lowered, as the next day she was clearly in
a better state.
I wonder if this documentary is really giving us the truth about this horrible condition and if 24/7 monitoring is the best option for them. It seems to rob them of a dignified life, probably making a lot of them with low self-esteem hate themselves that much more... Scientists over the past century have made great strides in medicine and yet they cannot come up with something that suppresses their appetite...
