An autoimmune disease stole this man's memory. Here's how he's learning to cope

An autoimmune disease stole this man's memory. Here's how he's learning to cope

Autoimmune encephalitis is a rare but devastating condition in which the body’s immune system mistakenly attacks the brain—the very organ responsible for our identity, memories, and personality. This baffling illness can strike seemingly healthy individuals suddenly and cause a bewildering array of symptoms, including confusion, memory loss, seizures, and even psychosis. The stories of people like Christy Morrill and Kiara Alexander illustrate the terrifying and mysterious nature of autoimmune encephalitis, as well as the emerging medical advances that offer hope for diagnosis and treatment.

Christy Morrill, a 72-year-old literature major from San Carlos, California, described his experience as “my year of unraveling.” What began as subtle memory lapses quickly escalated into a nightmarish ordeal where his immune system hijacked his brain. Morrill vividly recalls a bike ride with friends along the California coast during which he stopped for lunch but later forgot the entire outing. His wife noticed the changes before he did. Gradually, his condition worsened to the point where delusions took hold and large gaps appeared in his memory. Though he could still recall factual knowledge—such as the publication date of James Joyce’s *Ulysses*—he struggled to remember deeply personal moments, like his son’s wedding or family gatherings. Despite these losses, Morrill was able to recover enough to return to daily life and even lead a support group for others with autoimmune encephalitis, channeling his journey through haiku poetry.

Autoimmune encephalitis is one of the most perplexing ways the immune system can malfunction. Instead of defending the body against infections, it produces rogue antibodies that attack the brain, causing inflammation and neurological dysfunction. Symptoms often appear suddenly and can be so severe that they mimic psychiatric illnesses or other neurologic disorders, complicating diagnosis. Dr. Sam Horng, a neurologist at Mount Sinai Health System in New York who specializes in these conditions, explains that the key to suspicion lies in new, bizarre changes in mental status that worsen over time. Early recognition is critical because autoimmune encephalitis is treatable, and timely intervention can mean the difference between full recovery and permanent damage.

The term "autoimmune encephalitis" actually covers a group of diseases defined by the specific antibodies involved. The first major breakthrough came in 2007 when Dr. Josep Dalmau identified antibodies targeting NMDA receptors in the brain, leading to the recognition of anti-NMDA receptor encephalitis. This particular form often affects younger women and can be triggered by ovarian dermoid cysts—benign growths that contain tissue similar to brain cells. The immune system mistakenly attacks the NMDA receptors, disrupting communication between neurons and leading to drastic personality and behavioral changes, including hallucinations. Since then, researchers have identified about two dozen different antibodies linked to autoimmune encephalitis, each affecting various brain regions and producing a spectrum of symptoms.

Kiara Alexander from Charlotte, North Carolina, experienced the stealthy and frightening onset of this disease. Initially, she noticed subtle signs like brief episodes of forgetfulness and zoning out. But one day she suffered a seizure and was rushed to the hospital. The first doctors suspected dehydration, but after a second seizure, a neurologist ordered a spinal tap that revealed the presence of the damaging antibodies. Alexander’s symptoms rapidly worsened during a monthlong hospitalization marked by terrifying hallucinations and memory loss. She recalls waking up screaming and feeling as if she was trapped in a nightmare. The removal of her ovarian cyst and aggressive treatment eventually led to her recovery, though it took over a year before she could return to work full-time. Alexander emphasizes the importance of awareness and connection with other patients, describing the isolation that comes with such a rare and misunderstood illness.

In Morrill’s case, the diagnosis took several months. His memory loss was unusual, affecting autobiographical memories while sparing general knowledge and eloquence. This odd pattern prompted neurologist Dr. Michael Cohen to pursue specialized testing. Morrill’s wife also suspected subtle seizures, which were eventually observed by a doctor, leading to a spinal tap and a diagnosis of LGI1-antibody encephalitis. This form typically affects men over 50 and involves antibodies that interfere with neuronal signaling, particularly in areas of the brain responsible for memory. MRI scans confirmed inflammation in key memory centers. Morrill’s condition deteriorated to the point where he could no longer safely kayak, a beloved retirement activity, and he experienced severe agitation and delusions.

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