Encephalitis lethargic is a rare disease that causes extreme tiredness and sometimes leads to coma. Its cause is unknown, but it was popularized in the book Awakenings. Treatment is focused on stabilizing the patient, and no cure is available.
Encephalitis lethargic is a rare disease that attacks the brain, causing extreme tiredness and sometimes leading to coma. A worldwide epidemic of encephalitis lethargic occurred between 1917 and 1928 for no apparent reason, disappearing just as mysteriously. Isolated cases continue to occur and the disease has been extensively researched to learn more about its origins and how to treat it. Treatment is currently focused on stabilizing the patient and no cure is available.
The cause of encephalitis lethargic is not known. Some researchers suspect it may be an immune reaction, based on a history of past infections in many patients with the disease. However, scientists have not been able to identify a specific disease vector or pathophysiology, making the disease very difficult to treat. It was popularized in Awakenings, a book by neurologist Oliver Sacks. Sacks has notably identified levadopa as a successful treatment for patients rendered catatonic by encephalitis lethargic.
Patients with lethargic encephalitis usually complain of headache and high fever. They may develop tremors and personality changes, particularly psychosis. As the disease progresses, the patient becomes extremely fatigued and eventually falls into a coma. Patients may adopt stress positions while in a comatose state, such as facial grimacing or flexed limbs. The patient cannot be awakened and can remain in this state for years. Some patients recover, waking up and gradually developing more energy and strength. Other patients may wake up, but remain in a catatonic state, unable to interact or respond.
Doctors initially suspected that encephalitis lethargica was associated with psychological symptoms such as stress reaction or avoidance. When the epidemic began to spread in the early 20th century, doctors realized that it was definitely physical in nature, even if the mechanisms of the disease were not known. Several researchers worked independently on the disease, resulting in duplicate searches in several cases. As the researchers began interacting and exchanging information, they realized they were working on the same disease, even if they were using different names to describe it.
The unusual nature of encephalitis lethargica makes research very difficult, as people have a limited number of patients to work with if they want to explore causes and treatment approaches. Diagnosis may be missed in the early stages because doctors are often inexperienced with the disease. When identified, patients and family members may wish to consider treatment from a neurology specialist and can explore open research and clinical trials to see what types of treatment options are available.
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