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Why the 'Rapunzel Syndrome' Can Be Deadly

The condition led to the death of a 16-year-old girl in the United Kingdom. Here are some of the symptoms and treatments for trichophagia.

 

Rapunzel syndrome
Photo: JustGiving

Rapunzel may be a fictional character with long, flowing locks.

But Rapunzel syndrome, a rare psychiatric condition where people eat their own hair, is all too real — and potentially deadly.

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Earlier this month, a 16-year-old student in the United Kingdom died after ingesting her hair over several years.

The behavior, caused by a medical condition, eventually created an infected hairball in her stomach.

Ultimately, a burst ulcer shut down the girl’s vital organs.

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This syndrome is related to hair-pulling disorder, also known as trichotillomania.

The condition mainly affects girls over the age of 12, Dr. Katharine Phillips, a professor of psychiatry and human behavior at the Warren Alpert Medical School of Brown University who also has a private psychiatry practice in New York City, told Healthline.

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And about 10 to 20 percent of those individuals end up eating their hair, a condition known as trichophagia.

But the medical complications can be deadly, Phillips added.

Over time, a hairball can seriously damage the body by causing ulcers or fatally blocking the intestinal tract.

Hair isn’t biodegradable, Dr. Runjhun Misra, an internal medicine specialist in Oakland, California, told Healthline.

For example, when Egyptian mummies are discovered, their hair is usually intact. Likewise, hair balls can sit in the intestines, getting bigger and leading to obstruction, Misra noted.

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“There’s a slow buildup of hair over time,” she said. “You wouldn’t even be aware of it.”

Condition is a repetitive behavior

Hair pulling fits into a broader basket of body-focused repetitive behaviors, such as lip chewing and nail biting, say experts.

With the hair-pulling version, there’s a compulsion to pull out body hair of all kinds.

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The ailment is listed in the handbook used by psychiatrists, the Diagnostic and Statistical Manual of Mental Disorders, as being part of obsessive-compulsive disorders.

To qualify as a disorder, the behavior must cause distress and impair thinking, Phillips said. And there’s a broad range of severity.

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No one really knows what exactly causes Rapunzel syndrome, though. And people aren’t even aware that they’re eating their hair, says Phillips.

Also, the syndrome is shrouded in shame and silence. Because of this, it can go undetected for years.

Eating hair at night

Suzanne Mouton-Odum, director of Psychology Houston and a clinical assistant professor at Baylor College of Medicine, has also run into the syndrome.

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One patient, a 16-year-old girl, was pulling her hair and eating it at night, she told Healthline.

The girl’s parents were noticing that her hair was disappearing but couldn’t find it anywhere.

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The girl ended up getting a gastrointestinal test. Sure enough, she was pulling out and eating her hair, said Mouton-Odum, as a way to sleep better.

“Pulling hair is self-soothing,” she explained. “Most people never tell anyone. They think they’re the only person on Earth who does this.”

An invisible condition

Since Rapunzel syndrome is largely invisible to others, clues can be hard to come by.

But some of the physical tip-offs as the syndrome worsens include abdominal pain, nausea, and vomiting, according to studies.

Earlier clues may include wearing scarves or wigs to hide hair loss or having bald patches.

Parents are often the first ones to notice that something’s amiss. They shouldn’t be frustrated or panicked about it, though, said Mouton-Odum.

“Sometimes, it’s harder for the parents than the kids,” she added. “But they should accept that it’s a way to soothe the nervous system.”

It’s also not a form of self-mutilation, she emphasized.

Behavioral treatments like habit-reversal training can also be effective, said Phillips.

Awareness training, where patients monitor their hair pulling, notice triggers, and write them down, is one part of the treatment.

“Sometimes this is enough to reduce the behavior,” she said.

Oftentimes, just letting children know that they can die from ingesting hair stops it, says Mouton-Odum.

Next, patients can use stimulus control, where they try to stop behaviors by avoiding triggers. So if someone is pulling their hair while watching a boring show, says Phillips, that can be avoided.

“Boredom is a trigger for some people,” she said.

Competitive-response training, where people do physically incompatible actions like making a fist or squeezing a ball instead of pulling out hair, can also work, said Phillips.

“Rapunzel syndrome can cause a low quality of life,” she says. “But we have treatments that can help.”

The TLC Foundation offers resources for body-focused repetitive behaviors on its website.

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