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How Encephalitis Changed My Life

A Personal Perspective: When the immune system erroneously attacks the brain.

By Juliana Ortiz

One minute, I couldn’t stop babbling about starting high school; the next, I was in an ambulance speeding to Miami’s Jackson Hospital, where I was eventually diagnosed with NMDAR-antibody encephalitis—a disease most people have never heard of that forever changed my life.

It started in August 2014. I was 14 and a straight-A perfectionist. But this year was different. During my first week of school, I felt overwhelmed, nervous, anxious, and foggy. I kept telling myself it was just nerves, but people said I was acting odd.

Then, I failed my first test.

On August 22nd, everything changed. I always went home with my sister and her friends, but that day I didn’t show up or answer their calls. Everyone was furious. At dinner, it was clear something was wrong. First, I started tapping my spoon nonstop on the table. I couldn’t form a sentence. Then my body went numb, my eyes rolled back, and my mother called 911.

When the initial tests came back negative, the ER doctors said it was psychological. They told my mother to take me home and call a psychiatrist if it happened again. My mother, who is a physical therapist, said, “I know my daughter, and I know she’s not okay. I am not leaving until I know what

is wrong.” The doctors agreed to admit me, but the MRIs and CT scans were negative. A family friend, who knew someone with encephalitis, suggested my mother ask about brain inflammation. After a spinal tap tested positive, I received a diagnosis of NMDAR-antibody encephalitis, which primarily

affects young people. Some 40 percent of cases occur in people under 18, the majority of whom are female.[1] In this autoimmune disease, instead of recognizing and removing infections, components in the immune system react with the brain protein receptor N-methyl-D-aspartate, which helps

control thoughts, mood, and movement. Like me, people who come down with NMDAR-antibody encephalitis often have a mix of symptoms that include seizures, confusion, memory loss, hallucinations, and agitation that are often misdiagnosed as psychiatric disorders, delaying treatment.

The diagnosis was shocking. No one knew anything about this disease even though it affects people of all ages, and one person around the globe is diagnosed with encephalitis every minute.[2] It can be caused by an infection, such as COVID-19, measles, the herpes simplex virus, or—as in my case—when the immune system erroneously attacks the brain. In some parts of the world, encephalitis is more common than amyotrophic lateral sclerosis (ALS), bacterial meningitis, and multiple sclerosis.[3] It is often underdiagnosed and becoming increasingly prevalent due to under-resourced communities, vaccine hesitancy, insect-borne diseases, and climate change. [4]

Though I was incredibly lucky to receive my diagnosis quickly, finding the right treatment took time. As I lay in the ICU on a feeding tube, the doctors tried plasma exchange, Intravenous Immunoglobulin Therapy (IVIG), heavy doses of steroids, antipsychotics, and hypertension medication to control my skyrocketing blood pressure. My three-month hospitalization was endless and terrifying. I had involuntary spasms and bit down so hard, I lost two teeth. During vivid hallucinations, I battled to escape and, even though I only weighed 90 pounds, it took four nurses to hold me down.

When I went home in October, I was aggressive, childish, and unable to control my emotions. I thought my parents were holding me hostage and tried to escape when they drove me to the doctor. Once the police pulled us over, and I told the officer I was being kidnapped. My recovery required speech therapy, occupational therapy, physical therapy, visits to a neurologist, and monthly IV therapy. I returned to school in February 2015, just six months after my diagnosis, but by sophomore year, I hit bottom. My psychiatrist diagnosed anxiety and clinical depression, but I refused medication and left school, entering a special online program instead.

What finally helped was starting to see a neuropsychologist twice a week. We built a holistic plan that incorporated cognitive behavioral therapy, meditation, breath work, and ways to cope. I began feeling more like myself and, slowly, started being social again. Instead of feeling things would never be the same, I saw encephalitis as something that made me a stronger version of myself. That is when I knew I was going to be okay.

It wasn’t until 2017 that I felt fully recovered. I graduated from high school on time in June 2018. My college essay was entitled A Tragedy Worth Living because that is how I see what I went through.

In June 2023, I graduated from the University of Florida with a degree in neuroscience and psychology. I currently work with Alzheimer’s patients as a neuropsych research associate at the University of Miami, a job that has brought joy to my life.

When I struggled, there was nothing I wanted more than to connect with someone who had been through what I was going through. That is why I began volunteering for Encephalitis International, connecting with people and caregivers who are struggling with encephalitis. I know when people see me today, they find my story difficult to imagine because many people with encephalitis never fully recover. I also know the brain is powerful, and that timely diagnosis and treatment offer people with encephalitis the best chance of recovery.

Juliana Ortiz is currently applying for Neuropsych Ph.D. programs.

References

1 Florance NR, Davis RL, Lam C, Szperka C, Zhou L, Ahmad S, Campen CJ, Moss H, Peter N, Gleichman AJ, Glaser CA, Lynch DR, Rosenfeld MR, Dalmau J. Anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis in children and adolescents. Ann Neurol. 2009 Jul;66(1):11-8. doi: 10.1002/ana.21756. PMID: 19670433; PMCID: PMC2826225.

2 Jmor, F., Emsley, H., Fischer, M., Solomon, T. and Lewthwaite, P. (2008). The incidence of acute encephalitis syndrome in Western industrialised and tropical countries. Virology Journal, 5, 1-13.

3 Encephalitis – an in-depth review and gap analysis of key variables affecting global disease burden (2022). Dr Julia Granerod, Alina Etherington, Dr Nicholas Davies, Dr Benedict Michael, Professor Tom Solomon, Dr Ava Easton.

4 Granerod, J., Huang. Y., Davies, N., Sequira. P., Mwapasa. V., Rupali. P., Michael. B., Solomon. T., Easton, A. (2023). Global landscape of encephalitis: key priorities to reduce future disease burden. Clinical Infectious Diseases, 77(11), 1552-1560.

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