Moments after pleading no contest to petty theft, aggravated trespass, and attempted trespass, Tyler Jarvis got hungry.
Without hesitation, he turned to his mother in court and said, “I want this to be done, so I can get home for a snack.” Under normal circumstances, this would be considered a total lack of respect for courtroom decorum, but Tyler Jarvis’ case is anything but normal.
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He suffers from Prader-Willi Syndrome (PWS), a rare genetic condition characterized by, among other things, a perpetual feeling of hunger that can cause impulse-control problems, life-threatening obesity, and, in extreme cases, binge eating to the point of bursting the lining of the stomach.
READ: Coming Out About Eating Disorders Might Not Be Cathartic, But It’s Important
Needless to say, if you are constantly convinced that you are starving to death, and less capable of regulating impulsive behaviour, it could result in the occasional run-in with the law.
Merlin G. Butler is a professor of Psychiatry, Behavioral Sciences and Pediatrics at the University of Kansas Medical Center. Dr. Butler has been studying Prader-Willi Disorder for more than three decades, and for him, Tyler Jarvis’ case is, in a lot of way, a textbook one.
“This isn’t the first case like this. We see quite a few every year,” he says. “These patients have some learning impairment and issues with a very strong food drive. To gain access to food, they will resort to any means, including stealing.”
Which is exactly what happened to 20-year-old Tyler Jarvis last fall when he broke into three different homes and stole cash, sleeping bags, and a backpack, according to The San Luis Obispo Tribune.
“It basically equates to a feeding frenzy in a shark, they are just constantly ravenous until the food is gone and they fall asleep or their stomach ruptures.”
Like many parents of PWS patients, Jarvis’ mother, Michelle Christian, is forced to hide food under lock and key to keep her son from eating it. According to the Tribune, Jarvis had run away from home because he believed that he could eat as much as he wanted if he were homeless. As heartbreaking as this story is, it’s hardly surprising, given the symptoms associated with the syndrome.
“It’s a perfect storm,” says Butler. “These patients have decreased muscle mass, decreased metabolic rate, decreased physical activity, but they have a ravenous ongoing appetite and no sensation of fullness. The satiety center in their brains is never activated normally, so they’re constantly wanting to eat, even while they’re eating. Stomach rupture is a common cause of death. It really is a perfect storm.”
Jacob Yashinsky suffers from Prader-Willi Syndrome. He is a 24-year-old certified jeweler and entrepreneur from Toronto and he can relate to these kinds of episodes of uncontrollable hunger.
“I feel like if I don’t eat, I’m going to starve, even though I eat pretty frequently every day. It’s very difficult. It’s not psychological hunger, it’s physical hunger.”
“My main symptom is hyperphagia, which means that I’m hungry all the time. That’s the main thing that affects me in everyday life,” Yashinsky says. “I can’t concentrate on most days, until I have something to eat. I feel like if I don’t eat, I’m going to starve, even though I eat pretty frequently every day. It’s very difficult. It’s not psychological hunger, it’s physical hunger.“
And to say that PWS sufferers are constantly feeling life-or-death hunger is not an exaggeration. “It’s like a feeding frenzy in a shark,” Dr. Butler says. “We’ve done studies looking at that with MRI brain studies. In an experiment, we gave them a sandwich and have them look at food-related pictures before and after consuming a meal.
“The brain activity in the feeding system of the brain becomes overly active and once they’ve started eating it basically equates to a feeding frenzy in a shark, they are just constantly ravenous until the food is gone and they fall asleep or their stomach ruptures.”
By looking at the brain activity of PWS patients who have been exposed to hunger triggers, researchers are able to better understand the neural mechanisms that make the syndrome so difficult to control, but that has little practical application for patients. In terms of a cure, prospects remain bleak.
“It’s a genetic disorder. It’s part of who they are. It’s no different than a kid with Down syndrome, you can’t arrest them because they have a learning problem, it’s just part of the condition.”
“There is no cure right now,” says Dr. Butler. “It’s something they’re born with so it’s very hard to cure. It’s something you manage, as opposed to cure. The most effective treatment is keeping away from food sources, even if that means padlocking refrigerators and pantries. They have to be watched very closely. If there is food around they’re going to find it. You need to control their environment and diet.”
Despite these huge hurdles, Jacob Yashinsky has managed to lose almost 50 pounds in the last year. “I was 283 pounds when I started this diet and today I weigh 235 pounds. I took a lot of self-control that I didn’t use to have. It’s hard because there is food everywhere.”
While most people who live in areas with an abundance of food see it as a plus, it poses an existential threat to those suffering from Prader-Willi Syndrome. “I live in a neighbourhood with three fast food chains, about six or seven bakeries, and food from almost every culture. It’s pretty ironic; I have Prader-Willi but I live in a neighborhood in Toronto where they have pretty much everything available.
“It’s tempting and it’s dangerous,” Yashinsky says. “But somehow, with the help of my support workers and my family, I’ve been able to lose a lot of weight. It takes a lot of people to help me maintain that control.”
Tyler Jarvis’ hunger-induced crimes had him looking at jail time. After pleading no contest to felony burglary charges, he was eventually sentenced to three years probation and will be forced to live in a group home for Prader-Willi patients.
Dr. Glenn B. Berall is an endocrinologist and specializes in the treatment of PWS. Berrall says that to punish a young man for a behaviour which is fundamentally uncontrollable makes no sense. “Impulsive behavior is natural in these cases,” Berall says. “And stealing food is natural for them. Tyler Jarvis shouldn’t be jailed for this because it’s hyperphagia which causes these patients to seek food.”
Dr. Butler agrees, and says the solution lies in alerting communities of any residents who have the syndrome so that they have a better understanding of the disease and don’t treat these people like criminals.
“It’s a genetic disorder. It’s part of who they are. It’s no different than a kid with Down syndrome. You can’t arrest them because they have a learning problem, it’s just part of the condition. What we need is more awareness and better recognition.”
