Prader-Willi Syndrome

By Elizabeth White

(Listen to an audio version of this story).

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 Syndrome 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 structure and supervision needed for those affected with Prader-Willi to lead more healthy and meaningful lives.

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.

Lauren Baletsa: "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.

Lauren Baletsa: "That's pictures of how I was big. That's the living proof."

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?"
Lauren Baletsa: "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?"
Lauren Baletsa: "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.

Lauren Baletsa: "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 hungry."

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.

Alison Burns: "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.

Alison Burns: "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.

Elizabeth McQue: "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.

Lauren Baletsa: "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.

Steve Doyle: "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 feel too."

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 Retardation.

Latham Center
Gilbough Program
1646 Main St
Brewster, MA 02631-1716
(508) 896-5777

Broadcast October 27, 2005

Elizabeth White reports for the Cape and Islands NPR Stations