Imagine your world turning upside down in a matter of months. For Kassidy Anderson, a vibrant college student juggling extracurricular activities and rigorous studies, this became a stark reality. In the winter of 2017, Kassidy, a native of Buckatunna, Mississippi and a senior at William Carey University, began experiencing debilitating headaches, alarming memory problems, and strange flashes of light. Initially, she brushed it off, “I thought it was probably a torn retina,” she recalled. Little did she know, these were the first tremors of a rare condition that would soon escalate, making her feel like her “brain was on fire.”
Her symptoms rapidly intensified. Kassidy described experiencing “spacing out” episodes up to 60 times a day, a disconcerting sensation of floating detached from reality. Fearful of alarming those around her, she kept her struggles hidden. “I didn’t want anyone to freak out,” Kassidy admitted. “I just dealt with it for a while. I didn’t even tell my mom. The thing about this was that I could pull myself together for about 20 minutes a day. Just 20 minutes. I didn’t want people to think something was wrong with me.”
By March 2019, the secret became too heavy to bear, and she confided in her mother. By May, her condition had visibly worsened. Involuntary movements of her eyes and arms joined the growing list of bewildering symptoms. Frustratingly, local doctors remained baffled, unable to pinpoint the cause of her suffering. “I felt like I was going to die if I didn’t get any help,” she desperately explained. “I couldn’t breathe, and my doctors thought I might have severe anxiety. I felt like a stranger in my own body.”
One particularly harrowing experience in her microbiology class, where she couldn’t even recall her own name, became the turning point. It was then that she was referred to Michael Vaphiades, M.D., a distinguished professor and chief of Neuro-ophthalmology and Electrophysiology Services at the University of Alabama at Birmingham’s Department of Ophthalmology and Visual Sciences. At UAB, Kassidy found something invaluable – Dr. Vaphiades truly listened.
Dr. Vaphiades meticulously pieced together Kassidy’s complex symptoms, leading him to a diagnosis she hadn’t expected: anti-NMDA receptor encephalitis. This rare autoimmune disease is characterized by the body mistakenly producing antibodies that attack the NMDA receptors in the brain. These antibodies disrupt normal brain signaling, leading to brain inflammation, or encephalitis. While it can affect anyone, anti-NMDA receptor encephalitis is more prevalent in women.
The condition gained public attention through the 2016 Netflix film “Brain on Fire,” a movie Dr. Vaphiades and a colleague had recently discussed. When he mentioned the film to Kassidy, the protagonist’s symptoms resonated deeply, mirroring her own unsettling experiences.
“The way she described certain things made me think she had something like that, even though the initial testing was negative,” Dr. Vaphiades explained. “She said she was feeling out of touch and having these weird episodes, but the way she described them didn’t sound like seizures to me. She had headaches that couldn’t be accounted for by anything on the imaging or the spinal taps.”
Dr. Vaphiades suspected a teratoma tumor, a type of tumor that can trigger anti-NMDA receptor encephalitis, could be the underlying cause. Initial lab tests confirmed the presence of anti-NMDA receptor encephalitis, prompting Dr. Vaphiades to order imaging studies to investigate the possibility of an ovarian teratoma or another tumor. However, these initial scans came back negative. Despite the negative results, Dr. Vaphiades’s intuition persisted. “I knew it was a real longshot, but it was one of those instinct things,” he admitted. “I can’t fully explain why I felt so certain it was that, because this was way out of the realm of anything I had ever seen.”
Kassidy was admitted to UAB Hospital and started on a treatment plan of intravenous immune globulin (IVIG) while Dr. Vaphiades continued his determined search for the root cause. During her stay at UAB, she received care from Dr. Shruti Agnihotri, an assistant professor in the Department of Neurology. Despite numerous scans performed during her inpatient stay, no tumor was detected.
Upon her discharge in early July 2018, both Dr. Vaphiades and Dr. Agnihotri recommended Kassidy follow up with her local gynecologist. At her very first appointment, Kassidy’s gynecologist shared that she had encountered similar cases and suspected a teratoma would eventually become visible. She advised frequent ultrasounds for monitoring.
In late December 2018, the gynecologist excitedly informed Kassidy that the teratoma had finally been visualized on an ultrasound. Dr. Vaphiades’s intuition was correct, but it had taken months for the tumor to grow large enough to be detected. Subsequently, Kassidy underwent surgery to remove her ovary, which contained a teratoma the size of an average human fist. “There are many encephalidities that young women can get,” Dr. Vaphiades noted, emphasizing the diagnostic challenges these conditions present.
Following the tumor removal at her local Mississippi hospital, Kassidy experienced a remarkable recovery. “Dr. V,” as she affectionately calls him, remained a constant source of support, consistently checking in on her progress. This unwavering care meant the world to Kassidy. She continues to see Dr. Vaphiades for follow-up appointments every three to six months. “I always knew, if I needed something, I could call Dr. V.,” she said gratefully. “He was making sure I got the help I needed. He made me feel like I was cared for.”
Dr. Vaphiades’s dedication stemmed from his belief in the power of listening to his patients. “You can’t let a negative test lead you around by the nose,” he asserted. “You have to talk to your patients and really listen to your patients, and if what they’re saying makes you really believe they have something, you just have to be persistent and stick with it.”
Kassidy’s profound experience has transformed her future aspirations. Inspired by her journey, she is now determined to pursue a career in neuro-ophthalmology. A pre-med, biology-chemistry major at William Carey University, she is preparing to take her MCAT exam and apply to medical school. “Throughout this whole process, I’ve learned so much,” she reflected. “I’ve been in the patient chair, and now I want to be able to help others who may be going through something like this.” Kassidy’s story is a testament to the importance of patient advocacy, persistent medical investigation, and the life-changing impact of accurate diagnosis, even in the face of rare and complex conditions like “brain on fire” encephalitis.
