{"id":15089,"date":"2020-09-20T13:54:00","date_gmt":"2020-09-20T17:54:00","guid":{"rendered":"https:\/\/www.shortform.com\/blog\/?p=15089"},"modified":"2020-10-01T12:15:20","modified_gmt":"2020-10-01T16:15:20","slug":"disease-in-brain-on-fire","status":"publish","type":"post","link":"https:\/\/www.shortform.com\/blog\/disease-in-brain-on-fire\/","title":{"rendered":"How the Disease in Brain on Fire Changed Susannah"},"content":{"rendered":"\n<p>What was the disease in <em>Brain on Fire<\/em>? How did the disease in <em>Brain on Fire<\/em> change Susannah&#8217;s behavior?<\/p>\n\n\n\n<p>The disease in<em> Brain on Fire<\/em> is anti-NMDA-receptor encephalitis. It is a rare disease that was difficult to diagnose.<\/p>\n\n\n\n<p>Read more about Susannah Cahalan and her journey to diagnose the disease in <em>Brain on Fire<\/em>.<\/p>\n\n\n\n<!--more-->\n\n\n\n<h2 class=\"wp-block-heading\">Onset of the Disease in <em>Brain on Fire<\/em><\/h2>\n\n\n\n<p>At 24 years old, Susannah Cahalan is an ambitious, dedicated reporter for the <em>New York<\/em> <em>Post<\/em>. She\u2019s admired by her colleagues and respected by her editors. Like most 24-year-olds, she thinks nothing can go wrong with her vibrant, happy life.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Uncharacteristic Behavior<\/strong><\/h2>\n\n\n\n<p>During the height of the Manhattan bedbug scare in 2009, Susannah finds two red dots on her arm. She\u2019s convinced her apartment is infested, even though an exterminator says otherwise. Susannah doesn\u2019t know she\u2019s suffering from <a href=\"https:\/\/www.shortform.com\/blog\/ekbom-syndrome\/\">Ekbom syndrome<\/a>, an obsession with bugs that can signal the onset of psychosis.&nbsp;This was the start of Susannah&#8217;s brain on fire symptoms.<\/p>\n\n\n\n<p>A few days later, Susannah wakes up contentedly, alone in her boyfriend\u2019s bed; Stephen\u2019s a musician, and he\u2019s already at rehearsal. They\u2019ve only been dating a short time, but their relationship is trusting and comfortable.<strong> <\/strong>Suddenly Susannah is hit by another thought that\u2019s completely out of character\u2014an overwhelming compulsion to read his emails. Her paranoia was part of the brain on fire symptoms. She opens his computer and combs through his correspondence until she finds old messages from his ex. She digs through his dresser until she finds letters from ex-girlfriends.<\/p>\n\n\n\n<p>Suddenly she sees herself in the mirror. The image disgusts her. She\u2019s overcome by nausea and a migraine. Her left hand begins to tingle, then goes numb.&nbsp;<\/p>\n\n\n\n<p><strong>The tingling lasts for days, but Susannah is more worried by her uncharacteristic behavior than by her physical symptoms. <\/strong>She ignores the numbness until it moves down to her toes. She contacts her doctor, who refers her to Dr. Bailey, a famous neurologist.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Ineffectual Diagnoses<\/strong><\/h3>\n\n\n\n<p>Bailey conducts a routine neurological exam and declares everything is normal. He prescribes an MRI, which comes back normal. <strong>Bailey suggests Susannah has a virus, possibly mono.<\/strong> <strong>She\u2019s relieved to have a diagnosis.<\/strong> Her brain on fire symptoms were all over the place, so a virus was possible.<\/p>\n\n\n\n<p>Susannah returns to work. When she pitches two more stories and they\u2019re both rejected, she blames her poor performance on mono and takes another day off. Her doctor calls to tell her she doesn\u2019t have mono after all.&nbsp;<\/p>\n\n\n\n<p>That night marks a turning point. Stephen cooks Susannah an elaborate meal, but she can\u2019t eat it. Her thoughts run wild. She paces and chain-smokes. She\u2019s consumed by the desire to escape. She tries watching a TV show, then everything goes hazy. <strong>Susannah has her first seizure.<\/strong><\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>The Seizures Take Over<\/strong><\/h3>\n\n\n\n<p>Susannah awakes in the emergency room. After conducting a series of tests, the hospital discharges her over Stephen\u2019s objections. The following morning her mom and stepfather bring her to their home in New Jersey. Settling in, Susannah tries to work on an article for the <em>Post<\/em>, but she\u2019s unable to write. <strong>A psychiatrist in their circle suggests that Susannah has bipolar disorder and is having a manic episode<\/strong>. <strong>Once again, Susannah is thrilled to get a diagnosis, however dire it is.&nbsp;<\/strong><\/p>\n\n\n\n<p>Susannah returns to the city under her father\u2019s care. All\u2019s well at first, but her paranoia soon returns. \u201cThey\u2019re kidnapping me!\u201d Susannah screams, convinced she isn\u2019t safe with her father.<\/p>\n\n\n\n<p>Convinced her father is going to kill her, Susannah runs to the front door of the brownstone and bangs her fists against the door, screaming, \u201cLet me out!\u201d When she hears her father coming, she locks herself in the bathroom.&nbsp;<\/p>\n\n\n\n<p>That night <strong>Susannah\u2019s parents agree that she must be admitted to a hospital, as long as it\u2019s not a psych ward. <\/strong>Though Bailey is still convinced Susannah just drinks too much, he secures her a room at NYU Langone\u2019s Advanced Monitoring Unit, with 24-hour EEG monitoring. As soon as they arrive at the hospital, Susannah has a seizure.&nbsp;<\/p>\n\n\n\n<p><strong>From here on in, Susannah has no memories of the next month. There will be no glimmers of the \u201cI\u201d she had been for twenty-four years. She is unable to access her rational consciousness, and the break with her self is complete.<\/strong>&nbsp;<\/p>\n\n\n\n<p>As Susannah continues to deteriorate physically, her psychosis seems to recede. She spends most of her time staring into space. On her fifth day in the hospital, she\u2019s given a spinal tap.&nbsp;<\/p>\n\n\n\n<p><strong>Susannah\u2019s spinal tap shows an elevated number of white blood cells\u2014usually a sign of infection or inflammation, indicating that Susannah\u2019s problem is physiological rather than emotional in nature<\/strong>. The news finally gives Susannah\u2019s mom a clue she can comprehend.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Diagnosing the <\/strong>Disease in <em>Brain on Fire<\/em><\/h2>\n\n\n\n<p>Susannah\u2019s team runs autoimmune tests and bloodwork. The tests come back negative. Similarly, her MRIs and CT scans are clean. <strong>Susannah\u2019s doctors begin to wonder whether they\u2019ll actually be able to figure out the disease in <em>Brain on Fire<\/em>.<\/strong><\/p>\n\n\n\n<p>Dr. Siegel, the world-famous neurologist, quits Susannah\u2019s team. Unbeknownst to Susannah\u2019s family, he asks Dr. Souhel Najjar to take on Susannah\u2019s case. Najjar has a track record of diagnosing a number of mysterious diseases.&nbsp; Based on Siegel\u2019s expert summary, Najjar suggests that Susannah might have viral encephalitis. He prescribes a second spinal tap and an antiviral drug, and tests Susanah for viral encephalitis. <strong>All the tests come back negative.&nbsp;<\/strong><\/p>\n\n\n\n<p>Najjar performs a number of tests and concludes that Susannah is \u201chellishly catatonic.\u201d Then he has an idea: the clock test! He hands Susannah a sheet of paper and asks her to draw a clock. After numerous attempts, Susannah shows her picture to Najjar: She\u2019s squished all the numbers into the right side of the circle. Najjar claps his hands, ecstatic. He understands that this is concrete evidence that the right side of Susannah\u2019s brain is inflamed. When the right hemisphere is impaired, the patient will not \u201csee\u201d on the left side.&nbsp;<\/p>\n\n\n\n<p><strong>Suddenly <a href=\"https:\/\/www.shortform.com\/blog\/souhel-najjar\/\">Dr. Najjar<\/a> has a flash of insight: what if Susannah\u2019s inflammation is an autoimmune reaction? <\/strong>He recalls a paper describing four young women stricken by a rare <a href=\"https:\/\/www.shortform.com\/blog\/what-causes-autoimmune-disease-diet\/\">autoimmune disease<\/a>. Could Susannah have the same condition? He can only answer these questions by removing a tiny portion of Susannah\u2019s brain for study.<\/p>\n\n\n\n<p>Najjar sends Susannah\u2019s cerebrospinal fluid to <a href=\"https:\/\/www.shortform.com\/blog\/dr-dalmau-brain-on-fire\/\">Dr. Dalmau<\/a>, the neuro-oncologist who studied the four young women with a rare autoimmune disease. Dalmau confirms a diagnosis of anti-NMDA-receptor encephalitis, a disease caused by Susannah\u2019s antibodies attacking her brain. Najjar puts Susannah on an aggressive treatment plan to treat the disease in <em>Brain on Fire<\/em>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>What was the disease in Brain on Fire? How did the disease in Brain on Fire change Susannah&#8217;s behavior? The disease in Brain on Fire is anti-NMDA-receptor encephalitis. It is a rare disease that was difficult to diagnose. Read more about Susannah Cahalan and her journey to diagnose the disease in Brain on Fire.<\/p>\n","protected":false},"author":6,"featured_media":15291,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[40,16],"tags":[130],"class_list":["post-15089","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-books","category-health","tag-brain-on-fire","","tg-column-two"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v24.3 (Yoast SEO v24.3) - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>How the Disease in Brain on Fire Changed Susannah - Shortform Books<\/title>\n<meta name=\"description\" content=\"What is the disease in Brain on Fire? Susannah Cahalan changed as the condition worsened. Read more about how she was diagnosed.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.shortform.com\/blog\/disease-in-brain-on-fire\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"How the Disease in Brain on Fire Changed Susannah\" \/>\n<meta property=\"og:description\" content=\"What is the disease in Brain on Fire? Susannah Cahalan changed as the condition worsened. Read more about how she was diagnosed.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.shortform.com\/blog\/disease-in-brain-on-fire\/\" \/>\n<meta property=\"og:site_name\" content=\"Shortform Books\" \/>\n<meta property=\"article:published_time\" content=\"2020-09-20T17:54:00+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2020-10-01T16:15:20+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/s3.amazonaws.com\/wordpress.shortform.com\/blog\/wp-content\/uploads\/2020\/09\/brain-on-fire-disease-scaled.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"2560\" \/>\n\t<meta property=\"og:image:height\" content=\"1920\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Rina Shah\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Rina Shah\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"6 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.shortform.com\/blog\/disease-in-brain-on-fire\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.shortform.com\/blog\/disease-in-brain-on-fire\/\"},\"author\":{\"name\":\"Rina Shah\",\"@id\":\"https:\/\/www.shortform.com\/blog\/#\/schema\/person\/d07435826f13a8f422d5d333dceac287\"},\"headline\":\"How the Disease in Brain on Fire Changed Susannah\",\"datePublished\":\"2020-09-20T17:54:00+00:00\",\"dateModified\":\"2020-10-01T16:15:20+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.shortform.com\/blog\/disease-in-brain-on-fire\/\"},\"wordCount\":1162,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\/\/www.shortform.com\/blog\/#organization\"},\"image\":{\"@id\":\"https:\/\/www.shortform.com\/blog\/disease-in-brain-on-fire\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/www.shortform.com\/blog\/wp-content\/uploads\/2020\/09\/brain-on-fire-disease-scaled.jpg\",\"keywords\":[\"Brain on Fire\"],\"articleSection\":[\"Books\",\"Health\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\/\/www.shortform.com\/blog\/disease-in-brain-on-fire\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.shortform.com\/blog\/disease-in-brain-on-fire\/\",\"url\":\"https:\/\/www.shortform.com\/blog\/disease-in-brain-on-fire\/\",\"name\":\"How the Disease in Brain on Fire Changed Susannah - Shortform Books\",\"isPartOf\":{\"@id\":\"https:\/\/www.shortform.com\/blog\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/www.shortform.com\/blog\/disease-in-brain-on-fire\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/www.shortform.com\/blog\/disease-in-brain-on-fire\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/www.shortform.com\/blog\/wp-content\/uploads\/2020\/09\/brain-on-fire-disease-scaled.jpg\",\"datePublished\":\"2020-09-20T17:54:00+00:00\",\"dateModified\":\"2020-10-01T16:15:20+00:00\",\"description\":\"What is the disease in Brain on Fire? 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