Anti-NMDAR Encephalitis Lived Experience – Hannah W’s story

On July 23rd, 2021, I experienced a seizure while working at my summer job and was immediately transported to the ER. I had no prior history of epilepsy and was otherwise healthy. I was treated and released with no complications. However, a few weeks later, after enrolling at NC State University as a first-year student, I began to experience a series of unusual symptoms ranging from distorted vision, dull headaches, confusion, and delusional thoughts to psychotic symptoms.

On September 4^th, I was initially admitted to a psych ward. I was diagnosed with Bipolar Disorder Type 1 with psychotic features and mania. After no improvement was observed, I was admitted to another hospital on the 15^th as it was suspected my condition was not psychiatric, but medical. After several weeks of assessments, tests, and procedures, I was diagnosed with Anti-NMDA Receptor Encephalitis a rare auto-immune disorder where antibodies attacked the receptors of my brain.

After several months of aggressive treatment, I began to recover and was discharged to a rehabilitation hospital in October where I was subsequently discharged in November. What happened to me was strikingly similar to the book and Netflix movie Brain on Fire. A good deal of my medical expenses were covered by medical insurance, however, because of my lengthy stay in three different hospitals, over three months, in addition to the incurring expense of long-term physical, occupational, and neurological/cognitive rehabilitation and having never been ill to this degree, I have developed a deep awareness of how serious and how heavy of a burden it can be to deal with medical expenses. This has opened my eyes to the seriousness of healthcare in America. Since my diagnosis, my condition may flare up at any time, so I am continuing my regular follow-ups and will stay on immunotherapy for now.

Nevertheless, I have made it clear I intend to stay healthy while attending regular visits and check-ups as I prepare to return to school. Returning after such a significant setback can have some challenges, but I believe being open about my story, I will have the motivation I need to pursue the experiences I did not get the chance to last year. I can fully focus on my academics, thus increasing my chances of staying in school and graduating on time.

I am a current third-year student at NC State University. After my rehabilitation, I made it my goal to return with a fresh and optimistic mindset. That no matter what happened to me, I am stronger because of it. To this day I remain a conqueror and an achiever. Determined to excel in the various areas to the best of my abilities. I am in the fall semester of my junior year and things are going extremely well. I am involved much more than I expected, and I am making so many new friends and connections in this community! I am a part of my university’s Gospel Choir as well as the campus theatre. So far, I am finding myself doing new things such as living on my own, paying my own rent, and balancing two jobs and classes. Although some may see this as a challenge, but I view it as an opportunity to experience new ways of exploring my newfound freedom and independence. In conclusion, I am so blessed and thankful for my progress thus far, and expect much more.

Find more information n Anti-NMDAR encephalitis here.