Hair eating syndrome (Rapunzel): The “cloud-haired princess” disease

The syndrome of eating hair is also known by the rather strange name Rapunzel syndrome – the name of the cloud-haired princess. People with this syndrome often eat their own hair or the hair of others. The incidence is very rare and occurs mainly in women under 20 years of age.

hair eating syndrome
Hair eating syndrome is an extremely rare psychological syndrome that was first discovered in 1968.

What is Rapunzel Syndrome?

Rapunzel Syndrome is a very rare psychological problem characterized by a preference for eating hair, be it one’s own hair or the hair of others. Hair does not contain toxins that are harmful to the body but cannot be digested. Over time, the amount of hair that accumulates inside the stomach and intestines will increase, causing serious health effects.

If not paying attention, people around can mistake the patient for digestive problems such as poor absorption, constipation, digestive disorders, etc. In case of delayed detection, it can cause intestinal obstruction, perforation, gastrointestinal bleeding or worse, death.

Hair eating syndrome is named after Rapunzel – the cloud-haired princess in the Grimm fairy tale. This character has a beautiful appearance with very long hair. Therefore, after the discovery of alopecia areata in 1968, experts used Rapunzel’s name to name this particular syndrome.

Rapunzel syndrome occurs mainly in women under the age of 20 (70%) and especially in children before school age. People with this syndrome still eat and drink as usual, but do not eat hair instead of rice. Therefore, it takes people around a long time to detect abnormalities in the patient.

Causes of Rapunzel’s syndrome

Rapunzel syndrome is thought to be associated with intellectual disability and psychological trauma. Although hair has no taste, people with this syndrome feel relaxed after pulling and eating hair. According to research by psychologists, eating hair can be a behavior to release repressed emotions like self-destructive behaviors such as cutting hands, banging heads, self-burning, etc.

hair eating syndrome
People with hair pulling syndrome are at high risk of having hair-eating syndrome

Factors that can cause hair eating syndrome:

  • Intellectual disability: Most cases of hair-eating syndrome have intellectual defects such as autism, mental retardation, pervasive developmental disorders, etc. Due to imperfect intelligence, poor cognitive ability, from which leads to abnormal behaviors such as hair pulling and hair eating.
  • Psychological trauma from childhood: Psychological trauma from childhood can leave a deep wound in the soul. Children themselves have no life experience and no mood control skills. Therefore, children can eat hair as a way of relief and defense. Most patients with Rapunzel syndrome have been starved and abused since childhood.
  • Excessive stress: Excessive stress may be a risk factor for Rapunzel syndrome. Patients are mainly women under the age of 20 – this is a group of people who lack life skills, so they often struggle with problems in life. In the long run, stress builds up causing some people to release their emotions with negative behaviors such as pulling their hair, eating their hair, cutting their own hands, etc.
  • Psychosis: People with mental disorders such as schizophrenia, obsessive-compulsive disorder, schizoaffective disorder, anorexia nervosa, etc. have a higher risk of Rapunzel syndrome than healthy people. Of these, the majority of people with compulsive disorder develop this syndrome.
  • Have other psychological syndromes: Rapunzel Syndrome can develop concurrently with a number of other psychological syndromes such as Trichophagia, Trichotillomania and Pica syndrome. These syndromes are closely related and may develop concurrently or may also be a consequence of each other.
  • Due to physical health problems: Upon examination and treatment, doctors found that all people with hair eating syndrome had Celiac disease or iron deficiency. When treating these diseases, the condition of eating hair is markedly improved. Although the mechanism is not clear, it can be partly confirmed that nutrient deficiencies contribute to the increased risk of Rapunzel syndrome.
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Recognizing the syndrome of eating hair

Rapunzel syndrome is characterized by a love of eating hair (including hair of oneself, others, even hair of dolls, teddy bears). When eating hair, the patient does not feel as good as the food, but there is a feeling of relaxation and a marked reduction in stress. However, patients often eat hair when alone. Therefore, it is difficult for people around to recognize abnormal signs.

hair eating syndrome
People with hair eating syndrome feel relaxed when eating their own hair or other people’s hair

To detect Rapunzel syndrome, the family can rely on some of the following signs:

  • Regularly pulling, sucking and eating hair
  • Observing hair thinning, in some cases, scalp patches will appear due to excessive hair pulling
  • Severe cases can lead to baldness from a young age
  • Frequent abdominal pain, nausea, vomiting due to hair accumulation, which stimulates peristalsis of the stomach and intestines
  • Prolonged Rapunzel syndrome will make the digestive organs work poorly, the body lacks nutrition, weight loss, weakness, …
  • Severe cases can lead to intestinal perforation, peritoneal infection and death

Is hair eating syndrome dangerous?

People with hair-eating syndrome have almost no control over their hair-eating behavior. Some patients are aware of the abnormality but cannot control it. If resisted, the patient will experience extreme discomfort and stress. It’s also for this reason that Rapunzel is sometimes seen as part of the symptoms of obsessive-compulsive disorder.

The behavior of eating hair seems harmless, but in the long run, it will threaten the patient’s life. Hair is made of keratin, so it cannot be digested and broken down in the stomach. Over time, hair accumulates and interferes with the digestive process, leading to nutritional deficiencies, weight loss, weakness and growth retardation.

In addition, hair trapped in the stomach and intestinal tract can form large tufts. Then it grows, causing inflammation and redness of the mucosa. If not treated in time, internal organs and especially the peritoneum can become infected. Besides, there have also been many deaths due to Rapunzel syndrome but not detected and treated early.

Treatments for hair eating syndrome (Rapunzel)

Hair eating syndrome (Rapunzel) is rarely detected early, but mainly “accidentally” recognized during surgery or endoscopy of the stomach and intestines. Currently, this syndrome is not recognized in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). So doctors will diagnose severe trichotillomania.

For hair eating syndrome, psychological treatment is the most important method. However, the doctor will first perform surgery to ensure the patient’s life.

1. Hair removal surgery

Because the hair cannot be digested, the doctor will recommend surgery to remove the bun to prevent infection complications and intestinal obstruction. Small bunions can be removed through endoscopic techniques. However, if the bun is larger than 20cm, the doctor will appoint surgery to be able to remove the bun from the digestive tract.

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rapunzel syndrome bun
Buns of hair removed from the body of a person with Rapunzel syndrome

2. Psychological treatment

Surgery can remove the bunion and save the patient’s life. After that, the doctor will prescribe psychological treatment to stop the patient from pulling and eating hair continuously. Psychotherapy helps heal trauma from past negative experiences and manage psychological and psychiatric problems. Thereby, it can improve hair-eating behavior and help patients know how to release emotions in a healthier way.

Behavioral therapy is a highly regarded method in the treatment of binge eating syndrome. Through this therapy, patients can change negative behaviors, including the behavior of constantly eating hair.

In addition to psychotherapy, family support will also help improve and prevent relapse. Parents should spend time talking and sharing with their children. In addition, children should be encouraged to play healthy to stabilize their emotions, avoid locking themselves in the room, pulling their hair and eating their hair to relieve feelings of extreme stress.

3. Using drugs

Benzodiazepines such as Alprazolam can be used to treat hair eating syndrome. The drug is usually taken about 3 weeks after surgery. This medication is effective in reducing anxiety, stress, and depression. Thereby reducing negative behaviors such as eating hair or hurting yourself.

4. Nutritional Supplements

Lack of iron and some other nutrients can cause hair eating syndrome. Therefore, the doctor will prescribe nutritional supplements to prevent recurrence. Patients can supplement nutrients through diet or supplements.

The syndrome of eating hair is a very rare syndrome and the subjects affected are mainly women under the age of 20. Although the behavior of eating hair seems harmless, if not detected early, the patient can develop peritoneal infection and worse, death. Therefore, the family needs to detect the patient early so that the patient can be treated promptly. The risk of recurrence of this syndrome is quite high, so it is very important to coordinate between family and medical staff.

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