A Teenage Girl Developed ‘Rapunzel Syndrome’ After Eating Her Own Hair—Here’s What That Means

Doctors found that the mass of hair actually perforated her stomach wall.

A 17-year-old girl from the UK is recovering after eating so much of her own hair that she needed surgery to clear her intestines.

The teenager, who has not been publicly identified, is the subject of a new study published in BMJ Case Reports.

Rapunzel syndrome , eating hair, Trichotillomania disorder
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According to the report, the girl went to the ER after passing out twice. After doctors determined that she didn't have a head injury, they noticed she seemed to have a mass in her stomach. The girl then shared that she had struggled with stomach pain on and off for the past five months, and that it had gotten worse in the two weeks before she went to the hospital.

The doctors noticed that the teen had a three-year history of the hair pulling disorder trichotillomania and trichophagia, i.e. compulsive eating of hair that's usually associated with trichotillomania. Both conditions are linked to anxiety, the report noted. The teen had also lost weight over the past three years.

Doctors did a CT scan and made a horrible discovery: The girl had a "grossly distended stomach" with a large "gastric mass" made entirely of hair that had "formed a cast of the entire stomach," per the report. The mass had also perforated the stomach wall, resulting in the presence of air or gas and stomach contents into the girl's abdominal cavity.

rapunzel syndrome hair ball

The researchers explained in the report that hair is "resistant to digestive enzymes" and "unaffected" by the normal contractions of the stomach "owing to its slippery nature." As a result, they wrote, the hair fibers can become trapped in the stomach, stick together, and form a trichobezoar, aka a mass made of hair, or a hairball.

The teen was diagnosed with a condition called Rapunzel syndrome and doctors performed emergency laparoscopic surgery to remove the hairball. They found "multiple pockets of pus" and an oval-shaped mass of hair that was nearly 19 inches long. She was also given intravenous antibiotics for abdominal sepsis.

Rapunzel syndrome is a term that's been used to describe a solid mass of indigestible material that forms in the stomach. Most of the time this happens in children, the mass is usually made of swallowed hair from their head, dolls, or brushes. The condition is linked to trichotillomania and trichophagia, which are both rare. Up to 3% of the population will experience trichotillomania at some point in their life, according to the National Organization for Rare Diseases, and trichophagia is even more rare. The exact cause of trichotillomania isn't known, but it's characterized as an obsessive-compulsive related disorder in the Diagnostic and Statistical Manual of Mental Disorders Version 5.

Even in people who have those (already rare) conditions, Rapunzel syndrome isn't common. One study estimates that just 1% of people who struggle with both conditions will form a hairball in their GI tract. While it's rare, Rapunzel syndrome can be deadly. In 2017, a 16-year-old girl died from the disorder after an infected ulcer formed in her stomach that burst, causing her vital organs to fail.

Despite her health ordeal, the teen featured in the latest case report is now doing OK. She was admitted to the intensive care unit, and given a psychiatric evaluation. Seven days after her surgery, she was discharged. The researchers also noted that, during a 30 day follow-up, the teen was "progressing well" with dietary advice and the help of a psychologist.

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