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."

PWS会影响人的下丘脑,也就是控制欲望的那部分大脑。科学家希望通过对这种病症的研究,能够解开控制胃口和引起肥胖的原因。“(这是)非常折磨人的事情,每顿饭都如此,”吉姆·凯恩说,“简直要把人搞垮。”

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

凯恩的病让她的父母心力交瘁。虽然他们一直在极力控制,当凯恩20岁时,体重还是膨胀到了310磅。

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

“当我爬山、运动时,呼吸就十分困难。”她说。

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

PWS:食欲大过天

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.

20岁时,凯恩得知威斯康星洲有地方能接纳PWS成年病人,而她正符合条件。在无法治疗的情况下,这成了她唯一的希望。

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."

令人欣慰的是,在那里的六年来,她减掉了150磅。如今,她说自己感觉“非常好...因为看着自己一步步成功减肥。”

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.

她还交了很多朋友,变得更善言谈了。这个病友之家的成功之处在于它管理严格,病人既要工作,又要锻炼。这里的八位居民24小时都处于监视之下。

"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."

“他们作了详细的计划,每天每天,”病友之家的经理劳拉·鲍曼说。“所有的东西都锁着...让人找东西吃的时候会有压力。”

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.

但凯恩的人生仍不平静。上次她离开病友之家,仅仅过了10天,就沉了25磅。食物的诱惑总是太大,或许,她要在病友之家过完下半生。

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

她最大的愿望就是没有饥饿感,“生活会更轻松,我就能干任何我想干的事情。”