In a sudden turn of events, my excitement about embarking on high school life swiftly shifted to a frantic ride in an ambulance en route to Miami’s Jackson Hospital. It was there that I received the life-altering diagnosis of NMDAR-antibody encephalitis, a relatively unknown disease that would forever change the course of my life.
The journey into this unforeseen territory commenced in August 2014 when I was just 14 years old, maintaining a stellar academic record with straight A’s. However, this particular year unfolded quite differently. The initial days of school overwhelmed me with feelings of anxiety, nervousness, and a clouded mind. Despite attributing these sensations to mere nerves, others began to notice my peculiar behavior.
The tipping point arrived on August 22nd, marking a pivotal shift. While I typically accompanied my sister and her friends home after school, that day I inexplicably vanished, failing to respond to their attempts to reach me. Tensions rose as I exhibited alarming signs during dinner—incessantly tapping a spoon on the table, struggling to articulate coherent sentences, and eventually experiencing numbness, eye rolling, and a seizure-like episode that prompted my mother to dial 911.
Initial tests yielded negative results, leading the emergency room physicians to suggest a psychological origin for my symptoms. However, my mother, a perceptive physical therapist, adamantly refused to accept this explanation. She insisted on further investigations until the root cause of my distress was identified.
Subsequent MRI and CT scans failed to provide clarity until a family friend’s recommendation steered us towards exploring brain inflammation. A positive result from a spinal tap unveiled the presence of NMDAR-antibody encephalitis, a condition predominantly affecting young individuals. This autoimmune disorder involves an immune system malfunction where components target the brain’s N-methyl-D-aspartate receptor, crucial for cognitive functions, mood regulation, and movement control.
The revelation of my diagnosis was a profound shock. Despite its significant impact on individuals of all ages globally, NMDAR-antibody encephalitis remains largely obscure. Misdiagnosis is common due to the varied symptoms such as seizures, confusion, hallucinations, and agitation, often leading to delayed treatment.
While I was fortunate to swiftly receive a diagnosis, the journey towards effective treatment was arduous. Hospitalized for three months, I underwent a series of interventions including plasma exchange, Intravenous Immunoglobulin (IVIG), steroid therapy, and blood pressure management due to escalating levels. The ordeal was daunting, marked by involuntary spasms, dental injuries, and vivid hallucinations necessitating physical restraint by multiple nurses.
Upon my discharge in October, I grappled with emotional volatility and cognitive challenges, perceiving my surroundings through a distorted lens. Gradual recovery demanded a comprehensive approach encompassing speech therapy, occupational therapy, and neurological consultations, alongside ongoing IV treatments. Despite my return to school within six months post-diagnosis, subsequent academic struggles led to a pivotal decision to transition to a specialized online program.
The turning point in my healing journey materialized through regular sessions with a neuropsychologist, culminating in a holistic treatment regimen integrating various therapies and coping mechanisms. This transformative process enabled me to reclaim my identity, fostering a renewed sense of social engagement and resilience. Rather than viewing encephalitis as a permanent setback, I embraced it as a catalyst for personal growth and strength.
By 2017, I had achieved full recovery, culminating in my timely high school graduation in June 2018. Subsequently, I pursued a degree in neuroscience and psychology at the University of Florida, setting the stage for my current role as a neuropsych research associate specializing in Alzheimer’s patient care at the University of Miami—a profession that brings immense fulfillment to my life.
Reflecting on my arduous journey, I recognized the profound impact of connecting with fellow encephalitis survivors and caregivers. This realization prompted my involvement with Encephalitis International, offering support and empathy to those navigating similar challenges. While my story may seem improbable to many, serving as a beacon of hope for individuals grappling with encephalitis underscores the resilience of the human brain and the critical importance of timely intervention and treatment in fostering recovery.