By Elizabeth White
to an audio version of this
Millions of Americans struggle with over-eating, but for a small percentage of the
population the desire to eat is literally ever-present. Prader-Willi
is a rare genetic disorder which causes an insatiable hunger, among
other growth and behavioral problems. Individuals with the condition experience an
uncontrollable urge to eat, leading to life-threatening obesity. The Latham Centers
of Brewster runs eight
residential treatment houses in the lower-Cape area for adults with Prader-Willi
Syndrome. Known as the Gilbough Program
these homes provide the
supervision needed for those affected with Prader-Willi to lead more healthy and
Thiry-five year old Lauren Baletsa weighed 250 pounds when she first came to live in a
Gilbough group home in Harwich six years ago.
: "This is the living room and this is our scale over here in
the corner, and we usually keep our scale in the kitchen, but then people say, ah,
that's not a normal home having it in the kitchen. And so we keep it here and we
weigh ourselves every morning and we have a weight chart."
Lauren's diet is tightly controlled. There are locks on the cabinets and refrigerators,
as well as the garbage. Staff prepare meals according to strict calorie intact levels. In her
bedroom, Lauren shows a picture of when she first joined the Gilbough program.
: "That's pictures of how I was big. That's the living
Now 112 pounds, the energetic Lauren finds it hard to believe she, and the grossly
overweight woman pictured sitting on a couch, are the same person.
"How does that make you feel to look at that picture?"
: "Awesome, amazing. I'm going, my mother showed
me that and I's going who's that? That's you. Ah, I don't think so ma,
that's not me.
"And how long did it take you to lose that weight?"
: "About four years. Long time. It was a struggle."
There are approximately 5,000 people in the US diagnosed with Prader-Willi Syndrome,
or PWS. Though PWS is genetic, the disorder nonetheless reflects a culture
simultaneously awash in the ethics of personal responsibility and sophisticated
advertising which promotes unhealthy eating. Lauren says it's tough for her to watch
TV because of all the fast food commercials. She also says it's difficult for others to
understand her behavior, and tries her best to explain that for those affected by PWS, the
compulsion to eat is out of their control.
: "I just try and tell them that your brain tells your stomach
that you can stop and that you're not hungry. We can't. We're always
Alison Burns is one of Lauren's four housemates. Also small in stature, Alison
weighed an astonishing 800 pounds when she came to Gilbough and had had two heart
attacks by the age of twelve. After a decade in the Gilbough program Alison is down to
130 pounds. While on a walk around the neighborhood, she recalls the torment of
growing up obese.
: "When I was in school, I've been laughed at, stared at,
criticized at, I was, the, you know, a person, they could just, I was their toy"
Alison has a job processing shoes at T.J. Max. She used to work on her own, but after
eating a box of donuts left in the lunchroom she now has a job coach providing
supervision. Alison struggles with guilt as she speaks of the incident.
: "I could have done better, I could have left alone, and, not
lose my total independence, but it was, it is just too hard, I tried to ignore them, but the
smell, when it comes to junk food especially, I cannot, I have a very hard time."
Alison's job coach, Elizabeth McQue is a member of the Gilbough day staff. A former
teacher and therapist, McQue says employment is a powerful experience.
: "Work is an important factor in people's lives and
one of the goals of the agency is to normalize, and provide opportunities for people to
work and to earn money."
Gilbough residents also participate in weekly therapy sessions and frequent recreational
outings. In addition to making care more manageable, McQue says a group environment
is very beneficial for those affected by PWS. Lauren feels she's found a stronger
sense of self.
: "I'm able to go out in the community, to make friends,
to know that I'm human like everyone else. That, people have problems, whether its
greater or smaller, ours just have to be greater."
Lauren is currently enrolled in a vocational training program for special needs students
at Cape Cod Community College. She plans to major in pet care. House director, Steve
Doyle, says the Gilbough program aims to integrate individuals with Prader-Willi
Syndrome into the larger community. The benefits, he says, are mutual.
: "The potential is there, and they are capable of doing these
different jobs, or going to school, and I think the more they"re introduced to the
community, the more ah, understanding and complete the rest of the community would
And it's not just the Gilbough residents who are provided with the opportunity to
work. The Latham Centers Inc., which runs the Gilbough program, is one of the Lower-
Cape's largest year-round private employers with a local economic impact of almost
$20 million. The Gilbough program is largely funded through the Department of Mental
1646 Main St
Brewster, MA 02631-1716
Broadcast October 27, 2005
Elizabeth White reports for the Cape and Islands NPR Stations