The different signs of encephalitis - Aleena’s story

At 19 years old, Aleena was healthy, active and pursuing an education degree at her local community college in Maryland, U.S. When sudden personality changes and severe depression sidetracked her life, doctors struggled to diagnose Aleena with what would ultimately be identified as brain inflammation due to Anti-NMDA Receptor encephalitis.

Reaching a peak in December of 2015, Aleena had been struggling with a depression that robbed her of motivation and joy. A few weeks later, Aleena began feeling even more unlike herself, acting erratically and experiencing emotional personality shifts that confounded her family. Her eyes bulged, worrying her friends. Suddenly, her symptoms took a turn for the worse when Aleena began experiencing severe headaches and threatening hallucinations.

At this point, her family rushed her to the local hospital, where doctors were astounded by her symptoms and recommended that she be placed in a psychiatric ward. Luckily, Aleena’s sister, a neuro-behaviorist, understood that her symptoms were not indicative of a psychiatric issue and instead advocated for alternative care.

Aleena was sent home to recover with her family when she experienced her first seizure. Upon transferring to a larger hospital, she slipped into a coma and was finally diagnosed with encephalitis. She stayed in the hospital for over two months, while her family researched her condition and her doctors continued to care for her swollen brain.

When she finally awoke, she was transferred to another hospital where she relearned to hold a pencil, walk and speak properly - all activities that were impacted by encephalitis. However, when she was finally well enough to return home in April 2016, Aleena continued to experience erratic behavior.

To her and her family’s confusion, Aleena acted impulsively and childlike, often feeling overstimulated by people and noises. She was completely aware of her actions, puzzled as to why her “old self” was locked inside her head.

In my mind, I knew the things I wanted to do, say and act. My old self was in my head, but the outside didn’t reflect.

Over time, and with help of many speech, occupational and physical therapists, Aleena now feels close to “100 percent.” The most noticeable lasting issue is a change in her voice, caused by extended intubation which damaged her vocal cords. Although things will never be the same after encephalitis, Aleena no longer feels a disconnect between her “outside” self and her internal feelings, and she feels emboldened to achieve great things and share her encephalitis story.

After encephalitis, everything about yourself is uprooted. There are moments where you miss the person you were - but in some ways, my life has changed for the better.

With the support of her family and friends, Aleena was able to return to college, one class at a time. Five years later, Aleena is in the last semester of graduate school where she is studying communications management, in addition to working full time as a proof reader.

I lost my voice, but I also found it.

Now, when Aleena wakes up in the morning, she is excited to pursue interests she is passionate about, building relationships with her family and friends, and educating others about encephalitis through her work in graduate school.

Organizations like the Encephalitis Society are working to build better futures by driving research, accelerating awareness, and saving lives to create a world where encephalitis matters to everyone. Aleena is also working with the Encephalitis Society to help raise awareness of this often mis-diagnosed disease, the symptoms and severe consequences – and the support available to patients and their families.

What you need to know about encephalitis

Encephalitis is inflammation of the brain – a devastating neurological condition. It’s caused either by an infection invading the brain (infectious encephalitis) or through the immune system attacking the brain in error (post-infectious or autoimmune encephalitis).

About 500,000 children and adults worldwide are affected by encephalitis every year, that is one person every minute. Anyone can be affected by encephalitis irrespective of age, sex or ethnicity. The disease can be very serious, leading to brain injury, coma and in some cases death. There is low awareness of the condition – 78 percent of people do not know what encephalitis is.

World Encephalitis Day on February 22, 2022 will focus on making sure survivors and their families have the resources, support and information they need from encephalitis experts around the globe. For more information on the Encephalitis Society, please visit www.encephalitis.info and www.worldencephalitisday.org.

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