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We hear a lot of astonishing medical stories here at Vox. But this one stopped us in our tracks.
A 38-year-old woman showed up at a hospital in Peshawar, Pakistan, in 2013 with a range of mysterious symptoms.
For about two weeks, she’d noticed her abdomen slowly growing larger. She had spent the past two days feeling nauseous, often vomiting up anything she tried to eat. She’d also been losing weight — about 15 pounds over the past eight months — and had told doctors her appetite had faded about a year ago.
The doctors began to investigate, running tests on her blood and other fluids, checking the health of her organs.
They couldn’t figure out what was going on. And the patient’s condition was quickly deteriorating.
So the doctors decided to cut into her abdomen to see if they could find an explanation for her illness.
Today, they reported their findings in the journal BMJ Case Reports, a peer-reviewed resource where health care professionals share unusual cases.
It turns out the cause of the patient’s health woes were hairballs. Yes, hairballs, which had built up in her digestive tract.
The mass of hair — about twice the size of a tennis ball — in the woman’s stomach had a tail that extended into her small intestine. Another, smaller hairball — about the size of a golf ball — had been blocking the ileum (the third part of her small intestine).
As awful as this sounds, it was actually easy to treat. They removed the matted, black clumps, and discharged the woman from the hospital six days later.
“Rapunzel syndrome,” explained
The patient was suffering from “Rapunzel syndrome,” named for the long-haired girl in the Grimms’ fairy tale. It’s a rare complication of trichophagia, when people have the uncontrollable urge to eat hair they’ve pulled from their bodies.
Because the digestive tract can’t break down hair, strands can accumulate in the stomach and intestines, causing blockages and a range of serious health complications, including intestinal bleeding, weight loss, nutrient deficiencies, ulceration, anemia, and, very rarely, death.
Trichophagia is actually part of a family of repetitive body-focused disorders that includes nail biting and skin picking. It’s also closely related to another repetitive-body disorder called trichotillomania, where people feel an uncontrollable urge to pull hair out of their bodies.
The cause of these disorders is poorly understood (doctors think it’s some combination of genetics, stress, and environmental factors), and the disorders exist on a pretty broad spectrum, from the mild to the severe. With trichotillomania, for example, some people pull enough hair to result in bald spots, or pluck off their eyebrows, while others hardly notice they have a problem. Treatments like cognitive behavioral therapy can help people control the urge to pick.
The case reported in BMJ Case Reports prompted the doctors to review the medical literature on the syndrome, and they found only 88 other instances. Most presented in women under the age of 30. (Men represented only 6 percent of the cases.)
Still, the authors, led by Faiz Anwer at the University of Arizona, want others to know to look out for this health problem before people wind up in the hospital requiring surgery.
“This patient suffered for many months and was diagnosed very late with severe complications of Rapunzel syndrome,” wrote Anwer in an email. “Almost all cases reported in the published medical literature from all over the world regarding this disease required treatment with surgery.”
With better education, and earlier intervention, Anwer hopes patients who need it will get treatment and avoid some of that suffering.
