What is Encephalitis?

What Encephalitis Means to Me

February is always a time of reflection for me. This year, I’m more emotional than previous years, because it has been 5 years since I received a diagnosis of LGI1 Autoimmune Encephalitis (AE) and so much has happened in that time. Back then I knew that encephalitis = inflammation of the brain. I learned that an autoimmune disease happens when the immune system mistakenly attacks healthy cells. With AE, the immune system attacks healthy brain cells by mistake. Scary stuff, right? My body had begun producing an antibody (LGI1 in my case) that started to attack my brain by mistake. There are more than 20 AE antibodies currently known and with continued advances in testing, that number continues to rise.

Just today, I had a follow-up appointment with my neurologist by phone. On the eve of World Encephalitis Day, it all feels pretty timely. He was the 5th neurologist I saw and initially, I travelled from Texas to North Carolina to see him. When I met him 5 years ago, my health had been steadily declining for over 17 months and I had numerous neurologic symptoms that included left sided numbness and tingling, seizures, and cognitive changes, and I was no longer able to walk without a walker. Thanks to him, I received a swift and accurate diagnosis of LGI1 AE. I credit him with offering me aggressive treatment that not only slowed the progression of disease, but also helped put me into remission several years later. I can’t even begin to express the magnitude of my gratitude for him and all of the wise teachers, holistic health practitioners, thorough physicians, rehabilitation therapists and loving friends and family who supported me on my journey to health.

As I got off the phone with him this morning, I sat down to do my daily meditation with my guru, Roger Gabriel of the Chopra Foundation. I burst into tears when I saw that the theme for today’s meditation was HEALTH. It is not lost on me that I am in fact one of the lucky ones. Not everyone survives this devastating disease. Not everyone reaches a state of remission. Most people never recover fully, and still have residual issues with memory, word finding, movement, or fatigue. Amongst survivors almost no one, myself included, feels like they are back to baseline. All have some lingering symptoms or changes to who they once were.

My Encephalitis Journey

In 2017, my son made a video of me describing how the early years recovering from AE looked for me. Every case of encephalitis is different, but there are common threads amongst our stories. It’s hard to even watch it now as I remember how hard it was to express myself, keep my facts straight and tell my story back then. It took the support of my family and friends, a team of doctors and rehabilitation therapists, many visits to a skilled holistic health practitioner, and a massive commitment to alter my diet, lifestyle, mindset and environment to optimize my healing. I am happy to report that I no longer require treatment with the biologic agent, Rituximab, that depleted my immune system to allow it to reset and stop producing the harmful antibody that was attacking my brain. In fact, in January 2022, I tested negative for the LGI1 Antibody, which put me firmly in remission!

My Autoimmune Encephalitis (LGI1) Story

World Encephalitis Day

World Encephalitis Day is February 22nd. It is a day which celebrates and honours the millions of lives affected by encephalitis, a devastating neurological condition that causes brain inflammation. If you haven’t heard of encephalitis before now, that’s not a surprise. 77% of people worldwide do not know what encephalitis is. Encephaltis can affect anyone, regardless of age, sex or ethnicity. Symptoms vary but can include a flu-like illness or headache, drowsiness, uncharacteristic behaviour, inability to speak or control movement, and seizures. Whether the a result of the immune system going rogue, as is the case in autoimmune encephalitis or the result of an infection, as with viral encephalitis, most survivors are left with an acquired brain injury that requires a lot of rehabilitation therapy and even ongoing treatment.

Knowledge is Power

Every February, the Encephalitis Society takes the lead for World Encephalitis Day, hosting events like BrainWalk, lighting up local monuments red around the world, holding meetings and raising awareness. Through continued advocacy efforts and funding for research, there is hope for earlier diagnosis, treatment, and better outcomes. For more information on encephalitis, click here for the Encephalitis Society and click here for the Autoimmune Encephalitis Alliance, both organizations are excellent resources .

Knowledge is power, and is essential for robust healing. I invite you to subscribe to my newsletter, like and follow me on social media, and continue to follow my Journey to Health to learn how I overcame autoimmune encephalitis, one step at a time.