In the Lab and in the Real World, Progress in the Treatment of Schizophrenia

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Schizophrenia, which affects about 1% of the population, is one of the most devastating mental illnesses and certainly one of the cruelest.

People with schizophrenia are often tormented by inner voices that may sling crippling insults or issue divine commands to harm themselves or others. Many sufferers cannot distinguish these voices from those of other people.

For years, there has been little in the way of treatment for schizophrenia, other than medication, which often comes with devastating side effects. But now greater understanding of the disorder — both from patients who have learned on their own how to live with it and from new research by scientists — has helped drive new thinking about how to treat it.

On Sunday, the New York Times featured an emotional and inspirational story about one man who has learned to manage his illness on his own. The Times‘ Benedict Carey describes how after years of torment, of being abandoned by his family, of being kicked out of college, of losing friends and dozens of jobs because he kept hallucinating insults, computer consultant Joe Holt became aware, in a moment of crushing clarity, that the voices he was hearing might not be real.

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Holt had just gotten an unexpected promotion at his job. Carey reports:

“We were having a great time, laughing and celebrating, and at the end my boss says she’s going to the ladies’ room,” he said. “But just before she leaves, I hear her say something awful, just terrible — she insults me. Loudly.”

He stood there by the door, stung and confused, until she returned. The jab made no sense, given the spirit of the occasion, but it was still ringing in his ears.

“By the way, did you hear someone say,” he asked, repeating the insult.

She was dumbfounded. So was he, doing his best to pretend he was joking.

By the time he climbed back into his car, he was short of breath. Could it be that all those nasty remarks over the years, those biting insults from out of nowhere, did not exist, except in his own head?

Holt sat in the parking lot alone and wept until dark. His recovery began at that moment in 1996. Today, it remains an ongoing challenge because he still hears the voices, and they sound so real, so loud and so compelling that it can be hard for him not to respond to their taunts.

He has developed his own methods, though — ranging from self-soothing resistance to active avoidance. He uses techniques like talking back, listening to music through headphones to drown out the voices and taking medication during the worst periods. Always, he relies on his ever-supportive wife, who as Carey notes, “does not consider mental illness an adequate excuse to shirk responsibilities,” to help sustain him.

There are many people like Holt who are living with schizophrenia or other mental illnesses, who are taking charge of their care and cobbling together their own ways of dealing with unique situations. By learning from the success of these people — just like those battling addiction in 12-step groups — some researchers have begun looking at mental health care the same way that addiction experts look at recovery: as a “lifelong journey of self-treatment and discipline,” Carey writes.

This mental illness “recovery movement” is not without controversy, however, particularly when it comes to those with the most severe illnesses. Although the vast majority of people with schizophrenia are not a danger to anyone other than themselves, there are some who are at risk for violence without medication. In these cases, self-management without consistent medication could be dangerous.

But because currently used drugs can have such devastating side effects, including weight gain and Type 2 diabetes, and because they don’t help people learn how to live with their disease, both psychiatrists and advocates for the mentally ill agree that better treatments are needed. Researchers are studying people who are able to manage their disorder successfully to develop better talk therapies; they are also searching for the causes of schizophrenia to help try to prevent it and to develop better medications.

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Some researchers are looking at videogame-like “brain training” programs designed to address the cognitive and social difficulties that often underlie schizophrenia. While hallucinations may be most commonly associated with the disease, it is in large part cognitive problems — involving memory, attention and problem solving, for example — that prevent people with schizophrenia from holding down jobs and functioning socially.

Sophia Vinogradov of UCSF is testing one such system. The training involves exercises that involve learning to distinguish between different auditory tones and listening to and remembering snippets of speech and stories.

Brandon Staglin, a research participant with schizophrenia, recently described how the approach has helped him. He wrote on the blog of the International Mental Health Research Organization:

My favorite exercise involved playing a character traveling through time on a unicycle and jumping over obstacles in sequence as instructed. This exercise was hosted by a crusty engineer character who called himself “Grampa Lugnut.” Whoever designed the presentation was pretty creative.

In the end, I was tested again and my cognitive scores had improved across the board! I felt my quality of life had improved too. I recall that when talking with friends and family around that time I felt much more relaxed and that my sense of humor had returned. I also felt (and acted) more socially adventurous. I think improvements in my ability to parse conversation helped me to relax in social situations. Within a year I was able to return to work and life among friends.

Researchers are also starting to unravel the causes and contributors to the disorder. While the idea of the “schizophrenogenic mother,” who was thought to cause the disease by abusing her child, has been thoroughly discredited, studies now suggest that severe childhood trauma may precipitate or exacerbate the disease in some who are genetically vulnerable.

Holt, for example, was placed in an abusive orphanage when he was three. Separated from his siblings, he was beaten regularly, “sometimes with a board, sometimes with a Ping-Pong paddle, sometimes with a razor strap,” for failing to memorize Bible passages.

It is not hard to imagine how someone who suffered such early loss and was treated so harshly might develop a self-hating and insult-strewn internal dialogue. If Holt had a predisposition for difficulties in distinguishing between his normal internal thought stream and voices coming from outside, his early experiences may have contributed to his symptoms.

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Other research has recently begun to identify the genetic changes involved with schizophrenia, which appears to be driven by brain development problems that may begin in utero — even though symptoms of the disease typically don’t appear until late adolescence or early adulthood.

A just-published study in Nature Genetics, for example, compared people with schizophrenia who had a family history of the disorder and those who did not. Only one in 10 people with schizophrenia have a parent with the disorder, but that does not mean that the disorder doesn’t have genetic roots. In at least half of these “sporadic” cases, new mutations appear either during embryonic development or in the making of the sperm and the egg. Researchers identified mutations in 40 different genes in the sporadic cases they studied, some of which have previously been associated with schizophrenia or with other conditions like autism.

The variety of genes involved is not surprising, nor is the fact that the same genes may contribute to the risk of developing different disorders. Brain development is extraordinarily complex and interconnected. Disorders like autism and schizophrenia share some symptoms — for example, social withdrawal and problems understanding the minds and intentions of others.

Although the new research does not yet offer anything like a cure or preventive treatment, the combination of new insights into recovery and new discoveries in the biology of the disorder offer real hope that better care is possible and not so far off.

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Maia Szalavitz is a health writer at TIME.com. Find her on Twitter at @maiasz. You can also continue the discussion on TIME Healthland’s Facebook page and on Twitter at @TIMEHealthland.

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