From retirees cycling along the coast to young parents juggling work and family, a rare form of brain inflammation is quietly reshaping lives. Doctors are only beginning to recognise the early signals of autoimmune encephalitis, a condition where the body’s own immune defences mistakenly turn against the brain, disrupting memory, behaviour and perception in ways that can feel sudden and deeply unsettling.
When an ordinary day becomes a medical crisis
One calm morning on the California shoreline, 72-year-old Christy Morrill headed out for his usual bike ride. Nothing felt unusual. No pain, no warning signs. Later, when his wife asked about the ride, he realised he could not recall it at all. That first lapse seemed harmless. Soon, however, more memory gaps appeared. Over the following weeks, confusion grew, entire life moments vanished, and episodes of intense mental disorientation set in.
Christy describes that period as a gradual unraveling marked by hallucinations, distorted thoughts and an inability to place himself in time. US media later reported the diagnosis: autoimmune encephalitis, a brain inflammation not caused by infection, but by the immune system itself. In his case, the attack struck areas linked to memory processing and perception.
Doctors believe thousands worldwide develop this condition each year, yet many are misdiagnosed for months or even years. It can affect anyone, from children to retirees, often without prior health issues. Early signs may be subtle, a little forgetfulness, slower thinking, or unexpected emotional shifts, before symptoms rapidly escalate.
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How autoimmune encephalitis disrupts the brain
Autoimmune encephalitis occurs when the immune system wrongly labels brain cells as threats. It produces harmful antibodies that attach to proteins on neurons, interfering with how brain cells communicate. These antibodies often target receptors essential for learning, mood regulation and decision-making.
A common target is the NMDA receptor, a key chemical gateway involved in memory and emotional balance. When these receptors are blocked or disturbed, the brain’s internal messaging becomes chaotic, leading to symptoms that can appear psychiatric long before a neurological cause is suspected.
From mild confusion to seizures and psychosis
Kiara Alexander, a young mother in North Carolina, experienced this progression abruptly. She was rushed to hospital after an unexplained seizure. Initial assessments pointed toward epilepsy or a psychiatric episode. Only detailed blood and spinal fluid tests revealed antibodies attacking her NMDA receptors.
Doctors later found a small ovarian cyst, likely the trigger that sent her immune system off course. Treatment and rehabilitation took months. Kiara had to relearn everyday skills, from holding conversations to caring for her child. More than a year passed before she stabilised enough to return to work.
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Autoimmune encephalitis often mimics depression, bipolar disorder or schizophrenia. In some documented cases, individuals were treated as psychiatric patients for years. One woman carried a schizophrenia diagnosis for over two decades before spinal fluid tests revealed autoimmune encephalitis. After immunotherapy, her condition improved following years of limited progress on antipsychotic medication.
The hidden struggle behind a normal appearance
Even after the acute phase ends, many survivors feel like strangers in their own lives. Australian researchers report ongoing challenges such as short-term memory loss, poor concentration, slowed thinking and difficulty planning everyday tasks.
- Forgetting recent conversations
- Struggling with focus at work
- Needing more time to process information
- Difficulty organising travel or finances
Outwardly, patients may look well. They can walk, speak and smile. Yet writing an email, following a meeting or chatting in a noisy café can feel overwhelming. This mismatch often leads to misunderstanding from colleagues, friends and family. Studies suggest up to a third never return to their previous job or studies, despite appearing recovered.
Treatments that calm the immune response
Once autoimmune encephalitis is suspected, doctors act quickly to prevent further brain damage. The goal is to reduce inflammation and stop the immune system from producing destructive antibodies.
- Corticosteroids to rapidly lower brain inflammation
- Intravenous immunoglobulins to neutralise harmful antibodies
- Plasma exchange to remove antibodies from the blood
- Immunosuppressant drugs to limit further antibody production
In some cases, a small tumour, such as an ovarian teratoma, triggers the immune reaction. Removing it can lead to significant improvement. Early treatment is strongly linked to better outcomes, and neurologists are now testing more targeted drugs used in other autoimmune diseases.
Living with the memories that never returned
For Christy, early treatment likely prevented even greater damage. Still, the losses are profound. He has no memory of his son’s wedding, long-planned trips with his wife, or a year studying abroad in Scotland. While his general knowledge remains intact, the personal timeline of his life contains irreversible gaps.
He now builds routines around those absences, running a support group for people with brain injuries, writing short haikus, and using strategies to navigate social situations when his memory falters. Many survivors describe a clear before-and-after divide, with new limits and unexpected strengths on the other side.
Why diagnosis is often delayed
Early symptoms rarely signal a neurological emergency. Teenagers may show erratic behaviour, paranoia or withdrawal. GPs may first suspect anxiety, substance misuse or depression. Brain scans can appear normal in the early stages, and without obvious neurological signs, specialists may not be involved immediately.
Neurologists now stress that certain patterns should prompt urgent testing for autoimmune encephalitis, including rapid personality change, new seizures, unusual movement disorders, or memory loss paired with hallucinations and paranoia.
Understanding the medical language
The terminology can sound intimidating. Encephalitis simply means brain inflammation. Autoimmune means the body is attacking itself. Instead of targeting infections, immune cells mistakenly attack healthy brain tissue.
Antibodies are proteins designed to latch onto invaders. In autoimmune encephalitis, the wrong antibodies bind to brain receptors. Blood and spinal fluid tests look for these specific markers to confirm the diagnosis and guide treatment.
Long-term risks and how families can help
Although still considered rare, reported cases have risen sharply as awareness improves. Untreated, the condition can lead to severe disability, prolonged psychosis or death. With prompt treatment, many regain independence, though lingering fatigue, sensory sensitivity and emotional fragility are common.
Families play a vital role. Keeping notes on behaviour changes, symptom timing and triggers can help doctors spot patterns. Advocating for neurological input when psychiatric treatments fail may speed up diagnosis. At home, patience is key, repeating information, using visual reminders, and accepting that old multitasking habits may no longer be realistic.
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