Encephalitis lethargica is a medical term used to describe a specific condition of brain inflammation, where patients often show no clear symptoms or exhibit very vague signs. This makes diagnosing the disease more challenging compared to other forms of encephalitis.
When the character played by Robert De Niro in the famous film Awakenings states, “People have forgotten what it is to be alive,” he not only evokes a deep desire for life but also portrays a true story of patients who experienced a strange state of “frozen” existence for three decades.
The story of this film is based on the life of Dr. Oliver Sacks, a neurologist who dedicated his research and treatment efforts to a group of patients afflicted with a rare disease – encephalitis lethargica. This illness, also known as “sleeping sickness,” was once a pandemic that affected millions during and after World War I, only to suddenly disappear, leaving a series of unanswered questions for a century.
This illness, also known as “sleeping sickness.”
The Mystery Beginning from World War I
Encephalitis lethargica was first described by a neurologist in Vienna in 1917. The disease begins with flu-like symptoms but rapidly progresses to a more severe state. Some patients experience intense fatigue, sleeping continuously and only waking briefly to eat. Conversely, there are other patients who cannot sleep at all.
The early stages of the disease are very dangerous, leading to the death of about half of the affected individuals. Survivors face prolonged and much stranger symptoms such as joint stiffness, slowed movements, and facial muscle loss, which causes their eyes to be “locked” in a particular position. For those who are severely affected, their bodies seem to be “frozen” – unable to move or speak, as if trapped in their own bodies.
Not only limited to motor symptoms, many patients also exhibit psychological changes. Some develop stuttering or a monotone voice, while others undergo complete personality changes, with emotions and behaviors becoming erratic and uncontrollable. In a study conducted by scientists, some patients even displayed compulsive stealing behavior, an unusual manifestation never seen before.
Encephalitis lethargica was a pandemic that affected millions during and after World War I.
Initial Hypotheses
Finding the cause of a new disease is not an easy task. Sometimes, it takes decades of research to pinpoint an accurate link, similar to how HIV was discovered as the cause of AIDS or HPV as a cause of cervical cancer. For encephalitis lethargica, infection hypotheses were once considered a potential answer, especially when the Spanish flu pandemic occurred nearly simultaneously. However, the onset of initial symptoms in encephalitis lethargica patients happened earlier than the flu pandemic. Moreover, scientists found no signs of the flu virus in the brains of these patients, leading to doubts about this hypothesis.
Subsequent research focusing on the medical records of over 600 patients showed that only 32% had flu-like symptoms in the year prior to the onset of the disease. Even fewer than 1% had relatives affected by this illness, reducing the likelihood that encephalitis lethargica was related to genetic factors or spread through typical infectious patterns.
Another hypothesis suggests that the disease may be associated with some environmental factor. The year 1917 marked a critical period of World War I, with a multitude of manpower and resources moving, alongside new chemical weapons and toxins. However, researchers found no connection between the disease and exposure to chemicals or specific working conditions.
One of the unique characteristics of encephalitis lethargica is its ability to cause a wide range of symptoms.
Autoimmunity: A New Direction?
Recently, a new hypothesis suggests that encephalitis lethargica may be a form of autoimmune disorder. This is a process in which the body’s immune system mistakenly attacks its own cells. In this case, the neurons in the brain may have become the target of the attack. Other autoimmune diseases such as type 1 diabetes (attacking the pancreas) or Graves’ disease (attacking the thyroid) are well-documented in medicine. Another example is multiple sclerosis, resulting from the immune system attacking nerve cells in the brain and spinal cord.
Autoimmune encephalitis is also a similar condition. A recent study found that nearly half of the patients diagnosed with encephalitis lethargica showed signs of autoimmune encephalitis. This indicates a potential link, although the pattern of encephalitis lethargica does not entirely match any known autoimmune disease.
The Complexity of Diagnosis and Historical Significance
One unique feature of encephalitis lethargica is that it can cause a wide range of symptoms, from movement disorders like slowed movement and loss of flexibility to hallucinations, delusions, and even ethical disturbances. Some experts believe these symptoms may stem from an autoimmune response triggered by another infection, such as the flu or another illness that the immune system struggles to recognize. In such cases, the body’s immune system may “misidentify” and attack brain cells, leading to serious consequences for the patient.
However, the question of whether this is truly significant arises in the medical community. Encephalitis lethargica seems to have vanished, and the last known survivor of this pandemic passed away many decades ago. Nevertheless, a deeper understanding of this disease is crucial for humanity to prepare better for the future. Unfortunately, encephalitis lethargica is neither the first nor the last neurological epidemic in history. The emergence of autoimmune neurological diseases in recent times suggests that a similar outbreak could occur in the future.
The Significance of the Film Awakenings and Lessons for Today
The film Awakenings directed by Penny Marshall portrayed the lives of patients with encephalitis lethargica and Dr. Sacks’ efforts to awaken them. The image of the character played by Robert De Niro, awakening and experiencing the brief moment of living once again, profoundly resonates with audiences about the fragility of life and its importance. This serves as a reminder of humanity’s responsibility to research and confront mysterious diseases to avoid “falling asleep” in the face of potential dangers.
Although encephalitis lethargica remains a medical mystery today, advancements in immunology and neurology research may gradually help unlock these secrets. More importantly, they could better prepare scientists for potential neurological epidemics in the future, ensuring that humanity will not be caught off guard by strange diseases like encephalitis lethargica.
