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Anti-NMDR Encephalitis Lived Experience – Juliana’s Story

Anti-NMDR Encephalitis Lived Experience - Juliana's Story

I began to get very anxious all the time, I would have fuzzy thoughts and I was not able to concentrate during class.

I thought this was all part of the nerve-wreck of starting high school, so I never saw it as anything more.

My friends kept telling me that I was very distant and acting strange, but I was in denial.

On August 26, 2014, my life changed forever.

That day, after school, I went home and sat at the dining table. As my mom began to talk to me, she mentioned that I looked a bit off, so she asked me if I was okay.

Suddenly, I began to mumble and all my words were slurred, my eyes rolled back and I just stopped talking altogether.

Next thing I knew, I was waking up in an ambulance on my way to the Jackson Hospital in Miami, Florida.

All I remember was taking various exams, like blood and urine tests, because no one knew what was wrong.

My parents thought someone had maybe drugged me or somewhat.

Every exam kept coming back negative, so they took me to a room and told me to wait for more results.

It is all a blur from there.

I do not remember the following three months of that year. And, to this day, it still feels unreal.

According to my family, some of my doctors thought I needed psychiatric help because I was hallucinating and had several other side-effects.

It took my doctors two whole weeks to diagnose me with Anti-NMDA Receptor Encephalitis.

Before the diagnosis, they tried some treatments, but I only continued to get worse, so they placed me in the ICU.

Once they knew exactly what I had, I was given strong treatments like Steroids, Plasma Exchange (plasmapheresis), and Intravenous immunoglobulin (IVIg).

During the first month, I would have many involuntary body spasms and crazy hallucinations. They even had to tie me to the bed, with five nurses holding me down.

My life was at stake, they even had to give me a feeding tube that I kept trying to pull out every night.

No one knew if these would actually be my last days.

My poor family had to witness it all, but they never lost faith even when the worst of days never seemed to end.

After two-and-a-half long months in the ICU, I was finally released and sent home.

My last weeks at the hospital were the hardest because I had to learn how to walk again and if it wasn’t for my mom, who is a physical therapist, I don’t know what I would have done.

The road to recovery was a slow one. I had to regain all my mental and physical abilities through intense therapy.

My mind was still always in and out of consciousness for the next four months and I could never tell reality and dreams apart.

Most nights I would wake up crying because I had these terrible nightmares, but then I could go days without knowing where I was or realizing there was a different nurse watching me day and night.

It was definitely the toughest couple of months of my entire existence.

And there are still so many questions left unanswered.

Overall, what I learned from this tragedy is that we should never ever give up.

During the whole journey, I knew feeling bad for myself was not, and will never be an option, it also taught me that we can achieve anything we desire if we put our minds to it.

I was able to return to high school in February 2015, and before I knew it, I was back to my old self.

Currently, I am healthy and studying at the University of Florida. I never knew I would end up making it this far.

I am putting this out here because I want those who are going through something similar to know that they are not alone.

To all the families who have had a loss or who have witnessed the tragedy as mine did, I truly admire you and your strength.

If you have come this far, never lose sight of what is most important, the miracle of waking up every day healthy and alive!!!

God Bless xx

Juliana

Read more about Anti-NMDR encephalitis here.

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Page Created: 11 December 2023
Last Modified: 11 September 2024
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