Rapunzel Syndrome: Causes, Symptoms & Treatment

Rapunzel syndrome is a mental illness that occurs primarily in female adolescents. Patients show abnormalities by chewing their long hair or swallowing fibers from wool blankets as well as stuffed animals. These are indigestible and cause serious problems in the organism.

What is rapunzel syndrome?

Trichophagia, or Rapunzel syndrome as it is popularly known, describes compulsive behavior in the patient. It involves swallowing as well as eating one’s own hair over a prolonged period of time. Since hair cannot be digested by the organism, it gradually accumulates in the body and clumps together. As a result, severe abdominal pain up to gastrointestinal disorders occur. The disease occurs more frequently in girls and young women under the age of 20. The disease has not been observed in older women. The symptoms described by the patient are usually diffuse, nonspecific, and may indicate various other digestive diseases. Characteristic of Rapunzel syndrome is severe weight loss accompanied by a markedly swollen upper abdomen. This is often accompanied by intense hair loss or alopecia.

Causes

The most common causes of Rapunzel syndrome are psychological abnormalities. The disorder is usually accompanied by behavioral problems or nervousness. Impulse control problems cause patients to chew or bite off their hair. Affected individuals experience an uncomfortable tension throughout the body, which is compensated for by impulsive behavior such as chewing on the hair. As the disease progresses, the hair swallowed by continuous chewing can fill the entire stomach, wrap around other organs, and lead to painful intestinal obstruction. The onset of the disease is often accompanied by the loss of or separation from a loved one. This can be a spatial change as well as an emotional distancing of that person that is not processed. A perceived rejection or a lack of attention leads to psychological problems. It is unimportant whether the loss that has taken place was originally self-selected by the patient or fundamentally externally determined by external circumstances. Likewise, there is no difference in whether the separation came suddenly or was prepared.

Symptoms, complaints, and signs

Affected persons nibble at their hair, stuffed animals or cuddly blankets in mostly unobserved moments. This is often a sign of isolation, loss, or deprivation. Relatives are therefore well advised to check the tips of the patient’s hair for moisture from saliva. People suffering from Rapunzel syndrome initially report stomach pain and a general feeling of malaise. Later in the course of the disease, nausea and vomiting occur. An important clue is that patients do not vomit secretly. Sufferers lose weight and have difficulty retaining ingested food. Nevertheless, they do not suffer from loss of appetite. The abdomen becomes significantly thicker in parallel with the weight loss. A movable lump is easily palpable in the area of the stomach, which can easily be mistaken for a tumor. In addition, patients apparently lose their hair.

Diagnosis and course of the disease

The course of the disease is gradual and is triggered by emotional loss. Likewise, a permanent emotional deficiency or rejection can lead to the development of Rapunzel syndrome. Important is a good observation of the behavior in the affected patient in supposedly unobserved moments. Checking for strokes of fate in the past months can help to detect the disease in time. By means of an ultrasound examination or X-ray with contrast medium for the gastrointestinal area, the pigtail-like hair clumps can be easily diagnosed by the physician and differentiated from a tumor. Since in extreme cases, complications in the gastrointestinal tract can lead to a fatal outcome, it is recommended to raise awareness of the patient’s behavior.

Complications

If Rapunzel syndrome exists, it can have serious complications. In the long term, eating the patient’s own hair leads to gastric perforation, intestinal obstruction, or wall necrosis of the small intestine.In the further course, rupture of the stomach or intestinal walls may occur. This causes further complications such as blood poisoning, infections of the gastrointestinal tract and severe pain. In the last consequence, an untreated Rapunzel syndrome leads to the death of the patient. Less severe, but also problematic, are feelings of pressure, chronic pain and digestive problems triggered by the hair clumps in the gastrointestinal tract. In general, Rapunzel syndrome is also associated with psychological problems of the affected person. If these are not recognized and treated early, serious psychiatric disorders can develop. Injuries to the stomach walls or intestines may occur during surgical removal of the bezoars. Infections and wound healing disorders also cannot be ruled out. Possible complications after surgery also include chronic gastrointestinal symptoms, sensitivity disorders in the area of the surgery, and the development of scars. Prescribed medications may cause side effects and interactions, and in some cases may cause allergic reactions. In the absence of therapy, further hair clumps often develop, which can further damage the already irritated gastrointestinal tract.

When should you see a doctor?

Rapunzel syndrome should always be treated by a doctor. In most cases, this condition does not heal itself and significantly reduces the quality of life. Therefore, to avoid further complications, a doctor should always be consulted at an early stage. As a rule, the doctor should be consulted if the affected person chews his own hair or stuffed animals. The chewing itself can occur in various situations and is usually also observed by outsiders. In this case, it is mainly the outsiders who have to react correctly and induce the affected person to treat the chewing. In many cases, chewing is also followed by vomiting or severe nausea. It is not uncommon for those affected by Rapunzel syndrome to also suffer from loss of appetite and to be very dissatisfied with their lives. If these complaints occur and do not disappear on their own, a doctor must be consulted in any case. The treatment of Rapunzel syndrome mainly takes place with a psychologist. However, an examination of the stomach must also often be performed, as the hair can lead to severe abdominal pain.

Treatment and therapy

Since the orally ingested hairs have led to clumping, medical intervention is necessary. The so-called bezoars can no longer be eliminated by the body in a natural way. Therefore, they are surgically removed through a surgical procedure. Smaller hair clumps detected in time can also be removed endoscopically under certain circumstances. To prevent future accumulation and clumping of hair in the body and especially in the gastrointestinal tract, an accompanying intensive psychiatric treatment of the affected person is necessary. The relapse of Rapunzel syndrome after surgical intervention is considered very probable. Consequently, if the cause of the behavioral disorder and the associated obsessive-compulsive disorder that has developed is not clarified, problems will probably continue to occur. Educational measures are not advisable, as they can be considered unsuccessful. The patient is often not aware of his own behavior because he is emotionally overwhelmed by what he has experienced. Only through the path of a good therapy will he learn to change his behavior and be able to resist the impulse to chew his hair.

Prevention

To prevent Rapunzel syndrome, psychotherapeutic treatment is recommended in life-changing situations. As soon as a separation or the loss of a person is to be mourned, it should be observed whether this is processed well by the affected person. Since a neutral view is usually lacking due to one’s own experiences, it is advisable to have the situation assessed by an expert. The loss of an important person or social isolation can be processed in the therapeutic way and the probability for the development of the obsessive-compulsive disorder can be reduced.

Aftercare

Rapunzel syndrome occurs primarily in female adolescents and requires extensive medical treatment after diagnosis. On the one hand, this is done medicinally or, in severe cases, surgically, but on the other hand, it is mainly done psychotherapeutically.The physical symptoms such as severe stomach cramps and abdominal pain caused by swallowing the hair can be alleviated. To do this, it is necessary to encourage the child to drink a lot and also by giving laxative foods that support the digestive process. Teas with sage and chamomile can also be given for natural pain relief. However, the therapeutic treatment of the affected person by a psychologist is often in the foreground. This person must first determine the cause of the illness and stabilize the mental health of the child through appropriate strategies. Talking therapies can help, as can attending self-help groups to exchange ideas with other sufferers. Changes in the child’s social environment, sometimes also in school, can also have a positive influence on the psyche. Regular sports activities or new hobbies can also have a supporting effect. In most cases, Rapunzel syndrome requires long-term therapy and therefore also demands a great deal of understanding, patience and empathy from the affected parents.

What you can do yourself

Individuals suffering from Rapunzel syndrome initially require comprehensive medical treatment. Medication and therapeutic treatment can be supported by treating the affected child within conversations or through other approaches. Parents must treat the sick child with understanding. Medical treatment can be supported by laxative foods. For example, dried prunes, pear juice and drinking plenty of fluids have proven effective. If the symptoms are severe, laxative preparations from the drugstore or pharmacy can help. If the hairball is already in the gastrointestinal tract, this can cause severe cramps and other discomfort, which can be relieved by natural painkillers. For example, herbal teas with chamomile or sage are recommended. Furthermore, the affected persons must be treated therapeutically. The specialist can determine the cause of the condition and work out strategies with the patient to improve mental health. Depending on the cause, these may include talk therapies, participation in support groups, or changes in the environment and occupation. Rapunzel syndrome requires long-term therapy, which can be supported at home by behavioral training and distraction. In particular, sports and new hobbies have proven effective in the past.