She Can't Stop Eating: Living With Prader-Willi Syndrome a Daily Struggle

Aug. 17, 2009— -- Everyone says they have an insatiable appetite. But what if that were literally true? For Kate Kane, food is on her mind "all the time."

Kane, 26, feels so hungry that she begs, steals and even eats out of the garbage to get to food. And if someone didn't stop her, the consequences could be tragic.

"I could eat until I die, basically," she said. "Or I was -- got really sick."

For years Kane's condition was a mystery. Ironically, as a baby she wouldn't eat at all.

"Well, actually at birth the doctors came in and said she had failure to thrive syndrome," said her mother, Kit Kane. "We were very concerned."

When Kane gained an appetite her parents were thrilled. But by age 2 she was stealing cupcakes at birthday parties. And by age 3 she weighed 45 pounds, already 50 percent above the average.

Doctors finally diagnosed her with Prader-Willi syndrome, a genetic disease caused by a chromosomal flaw. It causes learning issues and muscle weakness, but mostly it causes a sense of never being full or satisfied. There is no cure.

Like the estimated 20,000 people with Prader-Willi, Kane will do literally anything for food. She's lost several jobs for pilfering food, and has even resorted to shoplifting.

"I have almost got arrested on two occasions," she said, for stealing "candy bars, I think."

She's also clever. Kane has had food delivered to houses down the block from her family's Maryland home to avoid her parents' watchful eye. And you wouldn't know that the Kane family keeps any food in the house.

"It's total lock down," explained her father Jim Kane. "You have to lock the refrigerator, the freezer, cabinets. I mean, you can't turn your back for seconds."

Still, Kane would try to circumvent her parents' efforts.

"I would find the keys where they were hidden and just pick the locks … take the locks off," she said.

Prader-Willi syndrome affects the hypothalamus -- the part of the brain that controls desires. Scientists hope that studying Prader-Willi will offer insight into what controls appetites and the causes of obesity.

"[It's] a very difficult situation, controlling every single meal," Jim Kane said. "It just wears you down."

The experience has been exhausting and emotionally devastating for her parents. By age 20, despite their vigilance, Kane had ballooned to 310 pounds.

"My breathing was very difficult when I exercised, walking up hills," she said.

Prader-Willi: Hunger 'Gets in the Way of Everything'

At 20, Kane learned that she qualified for a home for adults with Prader-Willi in Wisconsin. With no cure in sight, it was her only hope.

And good news: in the six years she's been there she has lost 150 pounds. Today, she says she feels "really good…because I see how far I've come in my success in losing my weight."

She's also made a lot of friends and is getting better at communicating. The key to the home's success: a structured environment, including work and an hour of exercise. The eight residents are monitored 24 hours a day.

"They have a schedule and they know what's coming day to day," said Laura Baumann, the group home's manager. "Also everything is locked … it takes that stress away from food seeking."

But Kane still struggles. The last time she was on home leave she gained 25 pounds in just 10 days. Food will always be a distraction, and she'll probably have to live in the group home for the rest of her life.

More than anything, she wishes her hunger would go away. "It would be so much easier. I could do anything."

"I think the hardest thing is Kate is pretty capable," said her father. "And she's not going to be able to realize the capabilities she has."

Her hunger "gets in the way of everything," he said, including her happiness. "And you wish for that to go away. You want it solved."

For more information on Prader-Willi syndrome, visit http://www.pwsausa.org/