Rapunzel Syndrome—a Hair Eating Type of Compulsive Behavior

Compulsive behavior can appear in many different forms such as in thoughts, urges, and actions. The type of compulsive behavior most people think of in relation to the term is repetitive hand washing or other rituals. Those who have compulsive disorders feel an all-consuming urge to complete their actions, thoughts, or urges that it can make daily living difficult. One type of compulsive behavior can be seen in a case study of a teenager who repeatedly pulled and ate their hair—a condition known as Rapunzel syndrome.

A Rapunzel Syndrome Case Study

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 case study published in BMJ Case Reports.

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 who had lost weight over the past three years also had a three-year history of hair-pulling disorder— trichotillomania—as well as trichophagia—the compulsive eating of hair. Hair eating is usually associated with trichotillomania.

Both conditions are linked to anxiety, the report noted.

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 in the girl's abdominal cavity.

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.

How Rare Is It?

As published in the Journal of Clinical Medicine Research, 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 heads, dolls, or brushes.

The condition is linked to trichotillomania and trichophagia, which are both rare—so rare that exact estimates of the number of people with these conditions are hard to determine. 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 in Pancreas, the journal of Neuroendocrine Tumors and Pancreatic Diseases and Sciences estimates that just 1% of people who struggle with both trichotillomania and trichophagia will form a hairball in their GI tract.

While it's rare, Rapunzel syndrome can be deadly. According to a report From the Independent, 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 this BMJ 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.