An American who was treated for schizophrenia for 20 years turned out to be sick with an autoimmune disorder: there may be thousands of such people

A new study suggests that a subset of patients with mental illnesses like schizophrenia may actually just have an autoimmune disease that affects the brain, reports Washington Post.

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The young woman was in a catatonic state—immobile, unblinking, and not knowing where or who she was. Her name was April Burrell.

Catatonia, or catatonic syndrome, is a condition in which a person becomes immune to external stimuli and loses the ability to move and speak normally.

Prior to becoming a patient, April was an outgoing honors student in accounting at the University of Maryland Eastern Shore.

But after a traumatic event, when she was 21, April suddenly developed psychosis and plunged into a constant state of visual and auditory hallucinations. The former high school graduate could no longer socialize, bathe, or take care of herself. April was diagnosed with a severe form of schizophrenia, an often devastating mental illness that affects approximately 1 percent of the world's population and can drastically impair patients' behavior and perception of reality.

“She was the first person I saw as a patient,” said Sander Marks, director of precision psychiatry at Columbia University. He became a medical student in 2000 and encountered April for the first time. “She is still the most difficult patient in my practice,” he said.

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Almost two decades passed before their paths crossed again. In 2018, another chance encounter led to several medical discoveries.

Marks and his colleagues found that while April's illness was clinically indistinguishable from schizophrenia, she also had lupus, a major and treatable autoimmune disease that affects her brain.

After months of focused treatment—and more than two decades of self-indulgence—April woke up.

April's awakening - and the successful treatment of others with similar conditions - should now change the care of some of psychiatry's most ill patients, many of whom languish in psychiatric hospitals.

Researchers working with the New York State Mental Health System have identified about 200 patients with autoimmune diseases, some of whom have been locked up in clinics for years. These people can be helped by a new discovery.

Scientists around the world, including Germany and the UK, are conducting similar studies. They found that the underlying autoimmune and inflammatory processes may be more common in patients with various mental syndromes than previously thought.

While the current study is likely to help only a small subset of patients, its impact is already beginning to change the practice of psychiatry and the way many cases of mental illness are diagnosed and treated.

April is gone

As a teenager growing up in Baltimore, April was very quick-witted and always eager to learn. She added to her father's checkbook and helped collect the rent on his property.

She lived with her father, who served in the army, and her stepmother. The family had 7 children. April was very focused on her studies and got very upset if she got a B in school. She played volleyball in high school, and her family remembers her as being good at everything. She helped her father renovate dozens of rental houses and even knew how to connect outlets and climb roofs to tar and repair them.

By all accounts, she was in excellent physical and mental shape and showed no signs of mental illness.

“April was a straight-A student,” said her older half-brother, Guy Burrell. “She was very friendly, very sociable. She just loved life."

But in 1995, her family received a nightmarish phone call from one of her professors. April was hospitalized. The details of what happened were vague, but it turned out that April had a traumatic experience. To protect her privacy, what exactly happened is kept secret.

After spending several months in a short stay psychiatric hospital, April was eventually diagnosed with schizophrenia.

Her family tried their best to take care of her, but April required constant attention, and in 2000 she went to the Pilgrim Psychiatric Center for long-term treatment. Her family visited her as often as they could, making the four-hour trip from Maryland to Long Island once or twice a month. But April was locked in her own world of psychosis, often drawing what seemed to be calculations with her fingers and talking to herself about financial transactions.

April couldn't get to know her family, let alone communicate with them. She did not want to be touched, hugged or kissed. Her family felt they had lost her.

Promising medical student

When April was diagnosed with schizophrenia, Marks was still a promising medical student at the University of Amsterdam overseas. Both of his parents were psychiatrists and he grew up around psychiatry and patients. Marx remembers as a child playing in the psychiatric hospitals where his parents worked. He never feared patients or the conditions associated with their illnesses.

As a visiting Fulbright Scholar in the United States, he chose not to go to more established institutions, but instead chose the Pilgrim Psychiatric Center, a public hospital in Brentwood, New York, where many of the most severely ill patients live for months, years, or even the rest of their lives. state psychiatric patients.

It was during his first days there that he met April, and that meeting, he says, “changed everything.”

“She just watched and just stood there,” Marks said. “She didn’t shower, didn’t go outside, didn’t smile, didn’t laugh. And the medical staff had to do everything for her.”

As a student, Marx could not help her. He continued his career, but he always remembered the young woman, frozen in her nursing position.

Return of April

Nearly two decades later, Marx had his own laboratory. One of his fellows spent time with patients at the Pilgrim Psychiatric Center, just as Marx had done years earlier.

Coincidentally, the intern, Anthony Zogby, ran into a catatonic patient who had been standing at the nurses' table the entire time. The guy returned to Marx, shocked, and told him what he had seen.

“It was like déjà vu because he starts telling a story that I know,” Marks said. “And I was like, 'Her name is April?'

Marx was stunned to learn that little had changed for a patient he had seen nearly two decades earlier. In the years since they first met, April had gone through many treatments—antipsychotics, mood stabilizers, and electroconvulsive therapy—all to no avail.

Marks was able to obtain the consent of the family for a complete medical examination. He called together an interdisciplinary team of more than 70 experts from Colombia and around the world — neuropsychiatrists, neurologists, neuroimmunologists, rheumatologists, medical ethicists — to find out what was going on.

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The first hard evidence was in a blood test, which showed that her immune system was producing a large number of different types of antibodies that were attacking her body. Brain scans showed that these antibodies were damaging her temporal lobes, areas associated with schizophrenia and psychosis.

The team hypothesized that these antibodies may have altered the receptors that bind glutamate, an important neurotransmitter, disrupting the way neurons can send signals to each other.

Even though April had all the clinical signs of schizophrenia, the team believed the underlying cause was lupus, a complex autoimmune disease in which the immune system switches to one's own body, producing multiple antibodies that attack the skin, joints, kidneys, or other organs. But April's symptoms were atypical, there were no obvious outward signs of illness; lupus apparently affected only her brain.

The diagnosis made Marks wonder how many other patients, like April, had been overlooked and written off as untreatable.

“We don’t know how many people there are,” Marks said. “But there is one person sitting in front of us, and we must help her.”

Awakening after two decades

The medical team set about countering April's raging immune system. They started with an intensive immunotherapy treatment for neuropsychiatric lupus. Every month for six months, April received short but powerful "pulses" of steroids for five days, as well as one dose of cyclophosphamide, a potent immunosuppressive drug commonly used in chemotherapy and borrowed from the field of oncology. She was also treated with rituximab, a drug originally developed for the treatment of lymphoma.

The regimen is grueling, requiring a month-long break between each of the six rounds so that the immune system can recover. Almost immediately, signs of improvement began to appear.

As part of a standard cognitive test known as the Montreal Cognitive Test (MoCA), she was asked to draw a clock, a common way to assess cognitive impairment. Before treatment, she was tested at the level of a dementia patient, drawing illegible scribbles.

But during the first two cycles of treatment, she was able to draw for half an hour - as if one half of her brain was back online, as Marx said.

A month after the third course of treatment, the clock in the picture looked almost perfect.

Despite this improvement, her psychosis remained. As a result, some members of the team wanted to transfer April back to the psychiatric facility. At the time, Marx had to go home to the Netherlands and feared that April would be returned to the center in his absence.

On the day that Marx was supposed to fly out, he went to the hospital for the last time to check on his patient, whom he usually found sitting in the dining room in a catatonic state.

This time he saw a completely different woman sitting in the room.

“It didn’t look like the man I’d known for 20 years and seen so weakened,” Marks said. “And then I looked closer and thought, ‘Damn it. That's her".

It's like April woke up after more than 20 years.

Joyful reunion

“I always wanted my sister to be who she was,” said Guy Burrell.

In 2020, April was declared mentally capable. She was discharged from a psychiatric hospital where she had lived for almost two decades and transferred to a rehabilitation center.

Due to covid-related visitation restrictions, April's family reunion was delayed until last year. April's brother, sister-in-law, and their children were finally able to visit her at the rehab center, which was a joyful and touching experience.

April was still insecure and fragile. But her family said she remembered her childhood home in Baltimore, the grades she got in high school, being a bridesmaid at her brother's wedding—seemingly, all until autoimmune inflammation began to attack her brain. She even recognized her niece, whom April had seen as a very young woman, and now saw as a grown young woman. When her father connected to the video call, April remarked, “Oh, you lost your hair,” and burst out laughing, as Guy Burrell recalls.

The family felt as if they were witnessing a miracle.

“She hugged me, held my hand,” Guy Burrell said. “We were so happy because we hadn’t seen her like this for ages.”

“It’s like she came home,” Marks said. “We never thought this was possible.”

Search for new forgotten patients

Marks talked about how, as a teenager, he saw the film adaptation of Oliver Sacks' Awakening, starring Robin Williams and Robert De Niro, and could not forget this film. “The idea that people have gone to these mental institutions and that they can still come back to life has always been with me,” he said.

Before his death in 2015, Sachs spoke with Marks about discoveries related to patients like April. Sacks, also a professor at Columbia University, took a personal interest in this work. He had a brother with schizophrenia.

“Your work gives me hope for the results we can achieve with our patients that I never dreamed of before. These are real cases of 'awakening' where people go home to their families to live out their lives,” Sachs said at the time.

After April's unexpected recovery, hospitals began to conduct tests to identify any patients with antibody markers for the autoimmune disease. A few months later, Marx was approached by Anka Ascanase, a rheumatologist and director of the Columbia Lupus Center, who was part of April's treatment group. “I think we found our girl,” she said.

Return of Devine

When Devine Cruz was 9 years old, she began to hear voices. At first the voices fought each other. But as she got older, the voices started talking about her. One night, voices urged her to commit suicide.

For more than ten years, the young woman went to hospitals. Her symptoms included visual and auditory hallucinations, as well as delusions that prevented her from living a normal life.

Devine was eventually diagnosed with schizoaffective disorder, which can lead to symptoms of both schizophrenia and bipolar disorder. In addition, she was diagnosed with mental retardation.

She was on a lot of medication—two antipsychotics, lithium, clonazepam, ativan, and benztropine—which caused a lot of side effects but didn't eliminate all of her symptoms. She often didn't know what was going on, her hair was tousled and the medications made her tremble and drool, her doctors said.

She also had lupus, which she was diagnosed with when she was about 14 years old, although doctors never linked the illness to her mental health.

When Marks and his team found Devine, she was 20 years old and firmly believed she was pregnant despite numerous negative pregnancy tests.

“Perhaps that was when she was at her worst,” said Sophia Chaudhry, a research assistant in precision psychiatry at Columbia University Medical Center and a physician who was closely involved in Devine’s care.

Last August, the medical team prescribed monthly immunosuppressive infusions of corticosteroids and chemotherapy drugs, a regimen similar to the one given to April a few years earlier. By October, there were clear signs of improvement.

After several sessions of treatment, Devine began to realize that the voices in her head were different from the real voices, a sign that she was reconnecting with reality. In January, she completed her sixth and final round of treatment.

In March, she recovered enough to meet with a journalist. “I feel like I'm doing better,” Devine said during a conversation in Marks' office at the New York State Psychiatric Institute, where she was a patient. “I feel like the person I should have been all my life.”

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During the interview, she was at first childishly shy. She said that her excitement and anxiety about having her story discussed reminded her of how she felt at school the day before the big field trip.

Although she lost about 10 years of her life due to illness, she remembers many details. As a child, she didn't know how to explain to her family what she was going through and often retired to her room. Devine still remembers how the voices sounded and the often unsettling images she saw: a hand reaching from the ceiling as she lay in bed, a creepy nurse with a crooked head and black teeth approaching her in the hospital.

She remembers the paranoia she sometimes felt. “I thought it was the end of the world. I thought the police wanted to grab me,” the girl said.

But she also remembers that fateful first phone call from Marks, when she learned that her lupus could affect her brain. She remembers asking, “If it affects my brain, what does that have to do with my mental illness?”

According to her doctors, her recovery is remarkable for several reasons. The voices and visions stopped. According to Marx, she no longer meets the diagnostic criteria for either schizoaffective disorder or mental retardation.

In a recent neuropsychiatric assessment, Devine not only drew a perfect watch, but asked how the doctor was doing.

But more importantly, Devine now admits that her previous illusions weren't real. Such awareness is profound, Chaudhry says, because many severely ill mental health patients never achieve this understanding.

Today, Devine lives with his mother and leads a more active and busy life. She helps her mother cook, goes to the grocery store, and takes public transportation to attend meetings. She even babysits her siblings' young children—listening to music, taking them to the park, or watching Frozen 2—duties her family would never have entrusted to her before her recovery.

She is grateful for the treatment and grateful to the team that made it possible. “I wouldn’t be here without their help,” Devine said.

“I feel more excited,” she said. “It’s like a new chapter is beginning.”

Expanding the search for more patients

While it is likely that only a subset of people diagnosed with schizophrenia and psychotic disorders have an underlying autoimmune disorder, Marks and other physicians believe that it is likely that many more patients are aggravated by autoimmune problems.

The April and Devine cases also inspired the creation of the SNF Center for Precise Psychiatry and Mental Health in Colombia, which was named after the Stavros Niarchos Foundation, which gave it a $75 million grant in April. The center's goal is to develop new treatments based on specific genetic and autoimmune causes of mental illness, said Joseph Gogos, co-director of the SNF Center.

Marks said that since the opening of the SNF Center, he has begun treating and caring for about 40 patients. The SNF Center is working with the New York State Office of Mental Health, which oversees one of the largest public mental health systems in America, to provide whole genome sequencing and autoimmunity screening for inpatients in long-term facilities.

"Even if we can only help a small fraction of them by doing these detailed tests, it's worth something," said Thomas Smith, chief medical officer for the New York State Department of Mental Health Services. “You're helping to save someone's life, get them out of the hospital, get them into the community, get them home.”

Negotiations are currently underway to expand the search to 20 outpatients in the New York State system. Serious mental disorders, such as schizophrenia, are most often not treated in disadvantaged groups. And autoimmune diseases like lupus disproportionately affect women and people of color.

Changing mental health care

The question of how many people the study will ultimately help remains a matter of debate in the scientific community. But the study has sparked excitement about being able to better understand what goes on in the brain during serious mental illness.

“I think that we, as basic neuroscientists, are now in a position to contribute both conceptually and technologically, and that is our responsibility,” said Richard Axel, Nobel laureate and co-director of the Columbia Zuckerman Brain Behavior Institute.

New research indicates that inflammation and immunological dysfunction are potential contributors to various neuropsychiatric conditions, including schizophrenia, depression and autism.

“This opens up new treatment options for patients who were previously treated very differently,” said Ludger Tebarz van Elst, professor of psychiatry and psychotherapy at the University Medical Hospital Freiburg in Germany.

In one study published last year in Molecular Psychiatry, Tebartz van Elst and colleagues identified 91 psychiatric patients with suspected autoimmune diseases and reported that most of them benefited from immunotherapy.

Belinda Lennox, chair of psychiatry at the University of Oxford, is recruiting patients for a clinical trial to test the effectiveness of immunotherapy in patients with autoimmune psychosis.

In addition to the more common autoimmune conditions, the researchers also identified 17 diseases, many of which have a variety of neurological and psychiatric symptoms, in which antibodies specifically target neurons, said Josep Dalmau, a neurologist at the Hospital Clinic of the University of Barcelona. Dahlmau first identified one of the most common of these diseases, called anti-NMDA receptor autoimmune encephalitis.

As a result of the study, screening for immunological markers in psychotic patients has already become commonplace in Germany, where psychiatrists regularly collect cerebrospinal fluid samples.

Marks also conducts similar examinations with his patients. He believes that highly sensitive and inexpensive blood tests to detect various antibodies should be part of the standard screening protocol for psychosis.

In June, Marks will present the results at a conference organized by the Stavros Niarchos Foundation.

And Devine will be there to share his story in his own words.

“The message I want to convey to people is that there is time to heal,” Devine said. “There is time to heal yourself from many of the troubles you have faced in life.”

The future of patients like April and Devine

April, who turns 50 this year, has been in rehab for the past three years. According to Marks, her family continues to visit her, but lately she has regressed because she did not receive proper care. Marks and April's family remain optimistic that she will recover once treatment is resumed.

“She would not want society to be disappointed in her or people like her,” said Guy Burrell.

Devine, now 21, still lives with her family, writes poetry and looks forward to helping others in the future, perhaps as an art therapist. She still needs support after losing over ten years of her childhood.

Psychologically, her experience is akin to being in a coma for 10 years and then waking up, "and the world moves on," said Stephen Kushner, co-director of the SNF Center. The treatment team is working to help Devine and other patients catch up and navigate life after recovery.

Devine said she wants to help motivate others in their struggles. When asked to share an excerpt from her poetry, she chose Healing, which reads in part:

"Hello dear,
I know you're struggling, struggling to figure out what's wrong and what's right.
Find out if it's too late to start something.
Leave out of fear
This is real.
Take your time, darling, there's no need to rush.
You are dear to others ...
You are not alone because the world has created beautiful creations just for you.”

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