In April 2020, Elly Hawkins, a mother of three who currently lives in Queensland, Australia, began experiencing some odd symptoms. At first, the 35-year-old woke up with extreme vertigo. It was so bad that, at one point, Elly believed that she might be having a stroke. Later, when she realized that she could not smell or taste anything, her family worried that she might have COVID-19. After a series of additional symptoms and odd behaviors, Elly was hospitalized. According to 9News, it took months until Elly received a final diagnosis: autoimmune encephalitis.

Elly’s Story

After realizing that she could not smell or taste anything, Elly visited the doctor and received a prescription for the vertigo. However, she began acting aggressively in the pharmacy, cursing out the professionals and even spitting at them. She went back to the doctor, afraid that something was wrong. As time progressed, Elly lost vision in her left eye; her neurological exams were abnormal. In the hospital, Elly did not know when she was born or where she was. But her tests showed that there was nothing wrong.

Even after another hospital visit, doctors believed that Elly’s condition was psychological: an anxious breakdown due to the COVID-19 pandemic, perhaps. For weeks, her condition declined: slurring and stuttering, lost function on the left side of her body, memory issues, language loss. She couldn’t remember what a brush was. Although a neurologist told her that she was having brain inflammation, Elly was told that her condition would get better with rest. Then her condition briefly improved for about three weeks, before Elly once again experienced vertigo, extreme fatigue, hallucinations and delusions, and “like my brain was burning.”

When Elly could no longer recognize her own children, her husband took her to another neurologist, who diagnosed her with autoimmune encephalitis within the week. Elly is still working towards recovery with medication, although she has permanent frontal lobe damage. Moving forward, she hopes to raise awareness around this condition.

Autoimmune Encephalitis

According to the Genetic and Rare Diseases Information Center (GARD), autoimmune encephalitis is:

a group of conditions that occur when the body’s immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain. Autoimmune encephalitis may be associated with antibodies to proteins on the surface of nerve cells, or within nerve cells.

Typically, autoimmune encephalitis is sporadic; it is not inherited or passed down through the family. Subtypes include Hashimoto’s encephalopathy, Rasmussen’s encephalitis, and LG11/CASPR2-antibody encephalitis. While symptoms may fluctuate over time, these often continue to progress over days or weeks. Symptoms can be neurologic or psychiatric, and may include:

• Impaired memory or understanding
• Facial dyskinesia
• Difficulty with balance, vision, or speech
• Compulsive behaviors
• Altered sexual behaviors
• Changes in mood or behavior, such as aggression, euphoria, fear or anxiety
• Unusual or involuntary movements
• Hallucinations
• Insomnia
• Psychosis
• Coma or loss of consciousness
• Seizures