By: Ava Gillan The brain is, by far, the most confounding part of the human body. With its trillions of neurons, many interconnected parts, and mysterious secrets to our personalities, beliefs, and emotions, our brains hold the key to who we are as individuals. Although the brain is unquestionably dynamic, it’s not indestructible. Millions of people around the world have been diagnosed with neurological disorders. In fact, about every one of six people in the world’s population suffers from neurological complications. However, these diseases not only include common ones such as Allzhiemer’s and Parkinson’s. New research has uncovered unfamiliar neurological disorders that have previously been dismissed and misdiagnosed. One such example is a rare, newly discovered disease called anti-NMDA autoimmune encephalitis. To summarize, it can basically be described as your own body attacking your brain. People under the influence of this disease often present symptoms such as hallucinations, delusions, and eventually, epileptic seizures. Many neurological disorders have similarities to these symptoms, such as schizophrenia. This is why anti-NMDA autoimmune encephalitis is so hard to pin down at first.
Susannah Cahalan, author of the books “Brain on Fire” and “The Great Pretender” was hospitalized with severe and confusing symptoms that terrified her family when she was only 24 years old. She was seeing things, such as an army of bed bugs that were invading her apartment. She believed that her father had tried to abduct her and kill his wife, her stepmother. She believed that she could age people using just her mind. She didn't eat or sleep, and she often spoke nonsense. Eventually, Susannah went into a catatonic state. After being studied by various doctors, Susannah was diagnosed with schizophrenia. Her doubtful parents demanded second opinions before taking further steps to secure her uncertain future. Susannah could have ended up in a psychiatric ward if it wasn’t for a doctor who was brought in specifically to consult her case. She was only the 217th person to be diagnosed with this disease. She was among the first to receive a mixture of drugs, including steroids, which she claims saved her life. Susannah’s condition is what is called in medicine a “great pretender”, hence the name of her second book. Because her disorder “pretended” or “mimicked” the symptoms of other disorders, confused doctors kept coming up with many different leads. The 1973 study that questioned psychiatrist' abilities to successfully diagnose patients with mental illness lead to an ongoing crisis of sorts. Stanford psychologist and author of this study, “On Being Sane In Insane Places”, David Rosenhan, was at the heart of this crisis. Rosenhan’s study involved eight “sane” volunteers who would appear at a mental hospital, entering under false names. These volunteers claimed to have false symptoms, such as hearing voices and seeing things. The purpose of this experiment was to test the vitality of psychiatric diagnosis. In other words, to test the accuracy of psychiatric diagnoses. All “pseudopatients”, as the volunteers were called, were admitted to different hospitals. They stayed there anywhere from a week to 52 days. In the end, all but one received the diagnosis of schizophrenia. A few real patients at the hospitals suspected that the volunteers were fakers, but the staff seemed oblivious. Differences in Rosenhan’s study and in his papers began to emerge. The study had alarming statistics from the pseudopatients in the hospitals. Contact with doctor only averaged about 6.8 minutes a day, and 71% of doctors didn’t even respond when a pseudopatient addressed them. But Rosenhan’s notes didn’t match with his statistics. It was assumed that some of the differences between the study and the papers could be sloppiness. But others looked more deliberate. Nonetheless, Rosenhan’s study made him a celebrity in the psychology world. Although Rosenhan died in 2012, his work remains one of the most cited papers in social science to this day. Susannah fervently went in search of the pseudopatients on a quest to understand more about her own neuro experience. In his notes, Rosenhan had revealed that he had volunteered himself for his own experiment. But the identity of the others was kept a secret. It was said that one of them was a famous female abstract painter, but Susannah hit a dead end when she tried to find her. In the end, she only managed to find one of the original eight volunteers, as well as a man who had participated in the experiment as a ninth pseudopatient but whose results were omitted from the findings. This “ninth” volunteer told Susannah that his experience at the mental hospital had actually been beneficial to him, helping him to learn more about himself during his time there. This completely contradicted Rosenhan’s whole purpose of the experiment. Rosenhan, wanting his experiment to be successful, had quietly excluded his research on the ninth volunteer from his experiment. In his journal, Rosenhan had only written one scathing note about the ninth pseudopatient: HE LIKED IT, referring to the mental hospital. By pursuing elusive information about this study, Susannah learned that Rosenhan had purposely fudged his own psychiatric experiment in order to prove that his hypothesis was correct, even though the true results revealed that he was wrong. As a result, Susannah developed a deeper respect for mental illness. Continued research on anti-NMDA autoimmune encephalitis can help open doors to the discovery of other unexplored neurological disorders. Psychiatric wards may contain growing numbers of misdiagnosed people. It is imperative that we detect these rare yet inevitably curable diseases before their victims reach the point of no return, at which point they will have suffered too much neurological damage to salvage any part of who they once were. At a mental hospital in North Carolina, Susannah presented her case to a doctor and soon stumbled across a female patient with the same neurological disorder Susannah had overcome. Susannah referred to this patient as her “mirror image”. The patient she visited had suffered permanent mental damage and would forever operate as a child. Susannah, who had recovered all 100% of herself when she was cured, reflected on how her life might have been if she had survived with less than 100% of herself intact. Who knows how many people have been misdiagnosed with schizophrenia, Alzheimer’s and countless other diseases? These people might have been able to escape permanent neurological damage, had doctors discovered what they actually suffered from. As a nation, we need to invest more time and energy in neurological research that will not only save but preserve the quality of life of people who have the overwhelming vulnerability of being misdiagnosed. I believe that young adolescents in particular need to be more educated about the misdiagnosis of neurological disorders. While researching Susannah Cahalan's fascinating story, I was dismayed when I learned that there are many other Susannah Cahalans out there who have been misdiagnosed, and whose lives are now being spent in a psychiatric ward. I believe that extended research of this topic has the potential to be life-changing. APA Citation: Her Illness Was Misdiagnosed As Madness. Now Susannah Cahalan Takes On Madness in Medicine.Emily Eakin - https://www.nytimes.com/2019/11/02/books/susannah-cahalan-great-pretender.html
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