Brain on Fire and the Rare Disease Behind the Film

This article discusses the plot of the biographical film Brain on Fire.

Susannah Cahalan was twenty-four when she began experiencing seizures, hallucinations, and, after only a few weeks, catatonia. Her unlikely story of rare disease, diagnosis, and recovery has now been made into a film called Brain on Fire. Based on her memoir of the same name, the film was initially released in 2017 and is now available for streaming on Netflix.

Film Synopsis

The film follows Susannah’s life as she develops the illness. At the beginning of the movie she is healthy; she is working as a reporter at the New York Post (her self-described ‘dream job’) and is in the early stages of a new relationship. But then she begins to experience the early signs of her condition – tiredness, numbness, and flu-like symptoms. She starts finding tiny red dots on her arms and becomes convinced that she has bed bugs, despite her friend at work being unable to see any bite marks.

She begins to see doctors about her mystery illness, but, at this point, none of them are particularly helpful. All her tests come back negative, and, even as her condition progresses and she begins to experience seizures, extreme mood swings, and hallucinations, the doctors are only able to suggest psychiatric disorders or that it may be due to alcohol withdrawal. Her increasingly extreme behaviour is jarring compared to how she is shown at the beginning of the film. Eventually, she is hospitalised and physically restrained, although doctors are still unable to determine the cause of her illness.

One month after her initial symptoms, Dr. Souhel Najjar diagnosed her with a rare neurological autoimmune disease called anti-NMDA receptor encephalitis. The title of the book and film comes from how he described the condition to her family, “her brain is on fire.”

About Anti-NMDA Receptor Encephalitis

The NMDA receptor is a brain protein that is involved in thought, movement, and mood. In anti-NMDA receptor encephalitis the immune system attacks this receptor, which typically results in symptoms like those seen in Susannah’s case. If left untreated the condition can lead to catatonia, coma, and, in some cases, death. At the time, doctors told Susannah’s family that she would be lucky to regain 80% of her cognitive abilities even after treatment.

Susannah’s Reflections

Susannah wrote an article for the New York Post in which she discusses the film development process. She isn’t able to remember large portions of her time in hospital (one of the symptoms of the disease is memory loss), and watching it back was “more edifying than upsetting”, until she watched her diagnosis scene, which “opened floodgates.” In terms of accuracy, she says the medical details are fairly truthful. She and Dr. Najjar were consulted to make sure that that information was correct. However, the filmmakers were reluctant to take on other changes she suggested. She wrote that she was worried how her brother would feel being cut out of the script, since he had supported her throughout her illness. She also wanted the film to include more scenes of her long recovery process, which in the end was only shown briefly in the last moments of the film.

Another factor that underlies the film is how unusual her case is, and how lucky she was to reach a diagnosis so quickly. In this interview for the Guardian, she talks about how her privileged position helped her. Living in New York City and with wealthy parents, she had access to “top, top doctors” at “one of the best hospitals.” Her intensive testing quickly racked up medical bills that totaled over $1 million. Despite all of this, she was still lucky to reach a diagnosis. Of most doctors attempting to treat her condition, she says, “nobody seemed to know anything.” That it was so difficult, even under these circumstances, to be diagnosed and treated highlights just how hard it can be for people who are not able to access such high quality medical care.

The Impact of the Film

For Susannah, raising awareness of the disease and helping other people get diagnosed is one of the most important impacts of her book and film. Susannah was the 217th person to be diagnosed with anti-NMDA receptor encephalitis. Since then, thousands more have been identified. In her article for the New York Post, she writes that after the movie was released she received “a glut of e-mails from fellow survivors of all kinds of illnesses.” By sharing her story and raising awareness of the disease, she hopes to help more people. “This movie”, she writes, “has the potential to save lives.”


Anna Hewitt

Anna Hewitt

Anna is from England and recently finished her undergraduate degree. She has an interest in medicine and enjoys writing. In her spare time she likes to cook, hike, and hang out with cats.

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