Lina Sorenson, 49, knows when it's time for her to start taking her Stelazine for her schizophrenia. It begins with thinking she can control other people's thoughts and read minds, which she admits can be "fun." But these thoughts quickly spiral out of control, with voices urging her to step onto the third rail of the subway if she doesn't want to lose her powers. "I have to be vigilant because I know that fun times can turn into a horror show at any time," says Sorenson, a former opera singer and musical theater actress. Staying on medication consistently is recommended for most individuals with schizophrenia, but for some patients, taking them only when symptoms threaten is appropriate, some clinicians say. Sorenson says she stays in "very close touch" with her doctor.

When most people imagine someone with schizophrenia, Sorenson would probably not come to mind. She is neatly and stylishly dressed, speaks elegantly, and shows visitors around Fountain House, the New York City "clubhouse" for people with serious mental illness where she is a member, with confidence and authority. Once, she confides, a visitor mistook her for Fountain House's president.

A number of factors determine prognosis for people with schizophrenia. Women generally fare better, but people diagnosed earlier tend to do worse, as do those with more loss of brain tissue. Having a supportive family can make a big difference. Symptoms and capabilities vary by individuals and situations. "There's certainly a range of disabilities associated with schizophrenia," says Lisa Dixon, a professor of psychiatry at the University of Maryland School of Medicine. "One has to be careful about making generalizations."

Schizophrenia hits most people in their late teens or early 20s. When the illness first strikes, a person may have delusional thoughts or hear voices, but is often not aware that he or she is ill. Frequently, he or she may have a complete decompensation and end up hospitalized. "I did not believe I was sick; I believed I was being assaulted by Satan and his demons," says Robin Cunningham, 65 (see profile), a retired businessman and advocate for people with schizophrenia. He has been living with the disease since he was 13 years old.

Such beliefs are typical of schizophrenia's so-called positive symptoms: the delusions and hallucinations that mark a person's loss of touch with reality. Medication can control positive symptoms for many people, but not everyone. For more than half of people with schizophrenia, symptoms are significantly reduced but still present, according to Jeffrey Lieberman, chair of psychiatry at Columbia University College of Physicians and Surgeons and director of the New York State Psychiatric Institute. Several studies have shown that the less dramatic, more constant characteristics of the illness, known as negative symptoms, are more disabling. So-called because they represent the absence of something that should be there, negative symptoms include depression, lack of motivation, and blunted affect. Some people with schizophrenia also experience mood swings and even bipolar-like symptoms.

People with schizophrenia also frequently have cognitive problems such as difficulty concentrating and focusing, and poor memory. Cunningham recalls one period when his wife would take out a DVD every weekend, and he would watch the film every night of the week without remembering he'd watched it the night before. "My short-term memory was virtually nonexistent."

Advocates agree that the current, "crying need" is for medications to address cognitive problems, which existing schizophrenia drugs do no treat. "Schizophrenia is fundamentally a cognitive pit," says Kenneth Duckworth, the medical director of the National Alliance on Mental Illness. "This is a big area of need."

The US National Institute of Mental Health formed its Measurement and Treatment Research to Improve Cognition in Schizophrenia (MATRICS) program in 2002 to investigate obstacles to developing such drugs, including the fact that there had, to date, been no agreement on how to measure cognitive problems in people with schizophrenia.

Several promising drugs are in Phase II trials, says Stephen Marder, a professor of psychiatry and behavioral sciences at the University of California, Los Angeles. Marder was part of the MATRICS program and also directs the US Department of Veterans Affairs' Desert Pacific Mental Illness Research, Education, and Clinical Center. "The industry is extremely interested," says Marder. "It certainly seems, I would say, even likely that sooner or later there's going to be a hit." Click here to read more about treatments in the pipeline.

In the meantime, Marder says, it is essential for clinicians to know that certain medications, such as benzodiazepines, can aggravate cognitive problems in patients with schizophrenia.

Medications for schizophrenia are notorious for their unpleasant side effects, which can include weight gain, agitation, sedation, and even lactation. "I remember one morning I woke up and I couldn't get out of bed, I couldn't walk," says Cunningham, who was taking perphenazine at the time. Parkinson-like symptoms made it difficult for him to balance and to walk on uneven ground.

Such side effects, as well as stiffness and tardive dyskinesia, are features of the older class of drugs (often referred to as typical antipsychotics), to which perphenazine belongs. Most target the brain's dopamine receptors, which explains many of their side effects.

It had been hoped that the side effects (which can include weight gain) of the newer atypical antipsychotics might be less burdensome than those of the older drugs. The National Institutes of Mental Health's Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) study, published in 2006, found little difference, however, in effectiveness or side effects between the two groups (see "The lessons of CATIE").

Still, some clinicians who work with patients insist that the newer drugs do make it easier for people to function in daily life. Clinicians such as Lehman agree that it's good to have as many choices as possible, since it may be necessary to try several drugs with one patient before finding the best one. "Finding a doctor who's sensitive to what actually works for you is a large, large part of the formula for wellness," says Sorenson.

People with schizophrenia also face a higher risk of a number of ailments, especially cardiovascular disease, diabetes, and obesity. "The problem is that people with mental illness have them sooner and harder," says Duckworth. People with schizophrenia are much more likely to smoke than the general population, and to abuse and become addicted to drugs and alcohol.

Simply coping with the challenges of daily life can also be a struggle for people with schizophrenia. "I think on a day-to-day basis it's those kind of more common things, like not having enough money, not having a job, not having a place to live, that can really be problems for people with the illness," Lehman says.

Francine Kirschner, 45, says the illness makes her "lazy" about taking her medications and personal hygiene, which is why living in Manhattan at Safe Haven, a transitional shelter offering supportive housing with twice daily medication calls, has been so helpful to her.

A visit to Fountain House reveals the huge diversity among the schizophrenic population. There are individuals like Sorenson, who lives on her own in a subsidized apartment and is planning to get her MBA. There are others for whom simply showing up is a challenge. "Some people get there, they lie down on the couch, that's their work for the day," Sorenson explains. And of course, many people with schizophrenia end up on the streets or in prison.

"What happens in a lot of instances is that schizophrenia becomes a doorway into poverty if you grew up in a middle class family or in some cases even an affluent family," says John Monahan, CEO of Greater Trenton Behavioral Health Care, a New Jersey provider serving 4,000 people with mental illness every year. "You can't work, you can spend down your savings, you can get alienated from your family if you're refusing treatment and you're symptomatic ... you find yourself with no resources, and the only option for you is to go on welfare. It becomes a pretty horrible life."

Nevertheless, Dixon, other clinicians, patients, and their families agree that a focus on getting better and promoting recovery is essential in coping with schizophrenia, no matter what a person's potential is considered to be. People with the illness need the right medication, they say, and they also need support (see "Beyond drugs"). And, they need to believe that they can get better - and to be surrounded by other people who believe the same thing. "What we've done over the last 50 years is we've taught people how impaired they are," says Dixon, whose brother was diagnosed with schizophrenia in his early 20s. "The best strategy for helping someone to achieve is not telling someone they can't do it."

People with schizophrenia and their advocates argue that the illness should be seen no differently from any other chronic health problem. "What a person with schizophrenia needs is not different from what a person needs after a serious accident, ... bilateral radical mastectomy, ... [or] multiple sclerosis," says Jeffrey Geller, director of public sector psychiatry at the University of Massachusetts Medical School in Worcester. Rehabilitation can help people learn to take care of themselves, pay their bills, get dressed for work and get there on time, start and sustain conversations, and even ask someone for a date, he explains.

People may also need some accommodations, says Geller, just as a person with a wheelchair needs ramps instead of stairs. For example, people who take the medication clozapine at bedtime may need jobs that start at 10 a.m. rather than 8 a.m., because the drug makes them drowsy in the morning. Ultimately, he notes, a person can often be weaned off such accommodations and other supports.

For Lina Sorenson, that's what getting well is all about. "Getting out there, being part of the regular population, is very, very important to recovery."