Do you know the signs of encephalitis?

Theresa’s story

At 27-years old, Theresa was fit, physically healthy, and loved yoga. When strange and unusual symptoms stumped her doctors, her family – and a well-known book – helped doctors identify she was experiencing brain inflammation due to encephalitis.

In December 2017, Theresa was spending the holidays with her boyfriend’s family near San Francisco. During her stay, sharp shooting pains started to snake around her entire body, she was severely anxious, and was having trouble sleeping.

She and her boyfriend Brandon knew immediately something was wrong. They rushed to urgent care where a provider informed her that her symptoms were related to shingles. He prescribed anti-itch cream and sent her home.

But Theresa’s health continued to decline. Her anxiety became worse and pain was radiating throughout her body. She made the decision to cut the holiday trip short and travel back to Los Angeles to see her primary care doctor.

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Packing up the car and saying her goodbyes is the last complete memory Theresa had until March of 2018.

Upon arriving in LA her family took her to a hospital where she slipped into a coma. Doctors ran multiple tests on her - MRIs, CTs, and ultrasounds - which all came back clear.

It was unfathomable how a young, fit, healthy woman could be experiencing the fight of her life.

Determined to find an answer, her brother and his girlfriend decided to conduct their own research. They came across Brain on Fire, a memoir by Susannah Cahalan about her experience with anti-NMDA receptor encephalitis. They requested doctors conduct tests to determine if this is what Theresa was also facing. Her brother’s hunch was correct – Theresa was diagnosed with anti-NMDA receptor encephalitis – an autoimmune disease where the body creates antibodies against the NMDA receptors in the brain. In simpler terms, Theresa’s immune system was attacking her brain. 

Susannah Cahalan, author of Brain on Fire, said:

The goal of Brain on Fire was to share my story with people who have experienced the terrifying and confusing symptoms related to encephalitis and are commonly misdiagnosed. The greatest gift of my diagnosis and journey with this disease is that I am able to help people, like Theresa, learn that they aren’t alone and help build a community to support those affected by encephalitis.

Finding the cause of Theresa’s mysterious symptoms was the first step of several to overcome. When she awoke from her coma her memory was severely impaired and she was emotionally overwhelmed. Journaling became her tool to aid her memory and she needed to regularly see a speech therapist to regain her ability to speak.

Today, Theresa admits that this diagnosis derailed her personal and professional life. She still feels a disconnect between her body and her mind. But along with Brandon and her therapy dog Louie, she is working to educate others on the often misdiagnosed disease known as encephalitis in her "Mind and Seek” podcast.

Organizations like the Encephalitis Society are working to raise awareness of encephalitis, its consequences and the support available. Theresa 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.

Dr Ava Easton, CEO of the Encephalitis Society, said: 

One of the Encephalitis Society’s aims is to provide support and resources to those that are affected by and in recovery from this condition. Theresa’s story generates strength, hope, and inspiration to other survivors.

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).

500,000 children and adults 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% of people do not know what encephalitis is.

World Encephalitis Day on February 22, 2020 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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