Awakening After 20 Years: How Lupus Treatment Could Revolutionise Psychiatry for ‘Forgotten Souls’

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Awakening After 20 Years: How Lupus Treatment Could Revolutionise Psychiatry for ‘Forgotten Souls’
Awakening After 20 Years: How Lupus Treatment Could Revolutionise Psychiatry for ‘Forgotten Souls’
TSU reportedly drops Kim Burrell’s radio show after her anti-gay comments, Photo by hdnux.com, is licensed under CC BY-SA 4.0

Imagine being lost in your own mind for twenty years, unable to speak or move, trapped in a catatonic state so severe that even treatment cannot reach you. This is the reality of April Burrell. This intelligent and lively young woman developed severe mental illness at the age of 21 following a traumatic event and was eventually diagnosed with severe schizophrenia.For years, she was trapped in her own mind, unable to communicate or care for herself, becoming one of the most severe cases at a state psychiatric hospital.

Her story is deeply moving and has been widely covered by media outlets such as The Washington Post. April’s “awakening” after 20 years of slumber is not only an extraordinary story of recovery but may also signal a breakthrough shift in how we understand and treat some of the most challenging mental illnesses.

Before her illness struck, April was an honors student.She was the valedictorian at her high school graduation and was majoring in accounting at Eastern Shore Community College in Maryland. Her family remembered her as a highly capable person who helped her father manage rental properties and even fixed electrical wires and climbed roofs to repair them. She was friendly and outgoing, according to her half-brother Guy Burrell, who described her as “someone who loved life.”

But in 1995, a nightmare phone call changed everything. April was found disoriented and taken to the hospital. After months of treatment at a short-term psychiatric facility, she was diagnosed with schizophrenia. The illness devastated her, leaving her unable to live a normal life or communicate effectively.

Pilgrim Psychiatric Center Brentwood N.Y.
Plymouth Church of the Pilgrims. Brooklyn, New York | Flickr, Photo by staticflickr.com, is licensed under CC BY-SA 4.0

By the year 2000, April required long-term care and was admitted to the Pilgrim Psychiatric Center in Brentwood, New York. It was there that Dr. Sander Markx first encountered her. His encounter with April left a profound impression on him. “She was the first patient to come before me,” Markx said. “To this day, she remains the most severely ill patient I have ever treated.”

He saw a young woman standing motionless at the nurses’ station. “She just stared, unmoving,” Markx recalled. “She didn’t bathe, go out, or smile. The nurses had to physically move her.” As a student, he couldn’t help her at the time, but she remained in his memory. April spent nearly two decades at Pilgrim Hospital.

Her family visited as often as possible, driving four hours from Maryland once or twice a month. But April was immersed in her own world, often counting with her fingers and muttering to herself about financial transactions. She couldn’t recognize her family, interact with them, or even be touched by them. Despite trying various treatments, including antipsychotic medications, mood stabilizers, and electroconvulsive therapy, none were effective.

nurses' station.
Photo by Boston Public Library on Unsplash

April’s story of recovery began almost twenty years after Markx first met her. In 2018, Markx, who had started his own laboratory, encouraged his research assistant Anthony Zoghbi to spend time with patients at Pilgrim Hospital, just as he had done many years ago.Remarkably, the intern happened to encounter a patient in a catatonic state standing at the nurses’ station.

The researcher returned to Markx, visibly moved, and described everything he had seen. Markx was stunned to learn that the patient had shown almost no change in 18 years. With the family’s consent, Markx initiated a comprehensive medical evaluation.He assembled a multidisciplinary team of over 70 experts from Columbia University and around the world, including neuropsychiatrists, neurologists, neuroimmunologists, rheumatologists, and medical ethicists, to determine what had happened.

The team began searching for answers beyond traditional psychiatric diagnoses. They looked for potential physical causes. The first crucial evidence came from her blood tests. The results showed that her immune system was producing large amounts of antibodies attacking her own body. Brain scans revealed that these antibodies were damaging the temporal lobe region of her brain, an area closely associated with schizophrenia and psychotic disorders.

The research team hypothesized that these antibodies might be disrupting communication between neurons by altering glutamate receptors. Although April exhibited all the clinical symptoms of severe schizophrenia, the research team suspected that the underlying cause might be lupus—a complex autoimmune disease in which the immune system attacks multiple organs in the body. In April’s case, lupus appeared to affect only her brain, serving as the specific biological cause of her neuropsychiatric symptoms.

draw a clock
Photo by Julia Tretel on Unsplash

This possibility shifted the focus of research from purely psychological interventions to medical treatments targeting the immune system. Markx collaborated with Dr. Anca D. Askanase, Director of the Lupus Center at Columbia University, who was deeply involved in April’s diagnosis and treatment process.

The treatment plan involved intensive immunotherapy, drawing on methods used in oncology and neuropsychiatric lupus. Over a six-month period, April received five days of high-dose intravenous steroids each month, combined with a single dose of cyclophosphamide (a potent immunosuppressive drug). Additionally, rituximab, originally used for lymphoma treatment, was administered.The regimen was extremely rigorous, with one-month intervals between each cycle to allow the immune system to recover.

Surprisingly, April showed almost immediate signs of improvement. A standard cognitive test—the Montreal Cognitive Assessment (MoCA)—asked her to draw a clock. Before treatment, her drawing was an unrecognizable scribble, consistent with symptoms of dementia.After just two rounds of treatment, she was able to draw half a clock, which Max described as “like half her brain had restarted.” By the third round of treatment a month later, her clock drawing was nearly perfect.

Psychiatric Center
Photo by Ansuman Mishra on Unsplash

Despite significant improvements in cognitive abilities, her psychiatric symptoms persisted initially. This led some team members to consider transferring her back to Pilgrim Psychiatric Center. Max was concerned that this might happen while he was in the Netherlands visiting family. On the day he left, he made one last visit to the hospital to see April, where he usually found her sitting in the dining room in a catatonic state.

But that day, when Max entered the ward, the person he expected to see was not there. Instead, there was a stranger. “This doesn’t look like the person I’ve known for 20 years who has been in a severe state of disability,” Max said. He observed closely and suddenly realized, “Oh my God, it’s her.” April had undergone an astonishing transformation, as if she had awakened after more than two decades of slumber.

April’s recovery reunited her with her family, a deeply emotional moment. In 2020, she was deemed mentally competent to leave the psychiatric hospital where she had spent nearly two decades and move to a rehabilitation center. Due to COVID-19 restrictions, in-person family reunions were postponed until the following year. Her brother, sister-in-law, and children finally got to visit her.

Guy Burrell described the moment with joy. “When she walked in, you would have thought she was a completely different person,” he said. “She recognized all of us and remembered things from when she was a child.” The reunion video showed April still appearing hesitant but vulnerable.She recalled her childhood home in Baltimore, her school grades, and her experience as a bridesmaid at her brother’s wedding, as if everything had stopped before the autoimmune inflammatory process began to affect her brain.

psychiatric medications
File:Psychiatric Medication.jpg – Wikimedia Commons, Photo by wikimedia.org, is licensed under CC BY 4.0

However, it is important to clarify that autoimmune mechanisms are not the solution to all mental health issues. This information may only be relevant for a small subset of patients—those whose neuropsychiatric symptoms are caused by immune-mediated diseases. For this group, the potential is immense. This research field is considered to have high impact and high returns, with the potential to rescue patients from the depths of mental illness and cognitive impairment.

The hope brought by this extraordinary recovery story is crucial for attracting much-needed research funding, whether from traditional channels or private donations, to better understand these diseases. Dr. Askanas urged everyone not to give up on patients with unexplained autoimmune diseases or mental symptoms and recommended that they collaborate with neurologists and psychiatrists.She referenced published case series of similar cases and the growing number of new cases, urging doctors to “keep an eye out for these patients.”

Related posts:
‘Don’t give up’: Catatonic woman wakes up after 20 years following treatment for lupus
A catatonic woman awakened after 20 years. Her story may change psychiatry.
Black Woman Stuns Doctors After Awakening From Catatonic State After 20 Years | Essence

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