This followed a 60 percent to 70 percent jump in deaths from 1979 to 1989 due to the autoimmune disease that has no cure, according to the U.S. Centers for Disease Control and Prevention.

And while scientists continue to make incremental strides against lupus, it remains one of the most difficult diseases to diagnose and one for which there have been no new treatment advances in more than 30 years.

Despite this grim portrait, a conference held Wednesday at the 2004 International Congress on Lupus in New York City aimed to shed some hope on efforts to treat and manage the illness.

Lupus is an autoimmune disease that primarily affects women between the ages of 15 and 44. It causes the immune system to attack the body's own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood or skin. The disease may eventually cause tissue damage, organ failures, disability and even death.

An estimated 1.5 million Americans have a form of the disease. Black women are three times more likely to get the disease as white women; Hispanic and Asian women are also at higher risk.

One of the primary challenges of lupus diagnosis and treatment has been the lack of any "biomarkers" -- or physical indicators -- to gauge who has the disease and how it is progressing.

"There is an urgent need for biomarkers," said Dr. Joseph Ahearn, senior author of one of the studies presented at the conference and co-director of the University of Pittsburgh's Lupus Center of Excellence. "We need improved methods of diagnosing lupus so we can make sure that when we are evaluating and treating patients we know this is lupus and not some other disease."

Symptoms of lupus can mimic other illnesses, and range from mild to life-threatening. They include achy joints; frequent fevers of more than 100 degrees F.; arthritis; prolonged or extreme fatigue; and skin rashes. The disease can also enter periods where symptoms aren't present, only to flare up unexpectedly, according to the Lupus Foundation of America.

Doctors also need blood tests so they can monitor the activity of the disease, Ahearn added. "It would be nice to be able to monitor disease activity more accurately and perhaps even predict upcoming flares, which would allow us to institute therapy earlier, prevent hospitalizations and reduce the time of the flare," he said.

The right biomarkers might also provide incentives to pharmaceutical companies to develop drugs to treat lupus. As it stands now, drug manufacturers have no way of knowing whether a particular drug is working, so they have been reluctant to participate in clinical trials, Ahearn said.

Ahearn and his Pittsburgh colleagues have determined that measuring fragments of two different proteins might provide the right clues as to what the disease is doing to the body. After looking at hundreds of patients, they discovered that the fragments attach to red blood cells. "Not only are the fragments abnormally elevated on red blood cells but the levels fluctuate as the level of activity of the disease fluctuates," Ahearn said.

The Pittsburgh researchers also found the fragments on platelets, meaning they may be implicated in blood clotting. "We think this is an extremely promising route to pursue," said Ahearn, who indicated that the team is working with the U.S. Food and Drug Administration to bring this research to fruition.

Another study presented Wednesday found the incidence of stroke and heart attacks were elevated in women with lupus. Ethnicity, however, did not emerge as a separate risk factor, said study co-author Dr. Sergio M.A. Toloza, of the University of Alabama at Birmingham.

A third study found that damage from lupus, rather than damage from the steroids that are used to treat the disease, was likely responsible for low bone mineral density in women with the disease.

"One of the problems has been to separate how much of the low bone mineral density is related to corticosteroids or to the disease itself," said study co-author Dr. Chin Lee, of Northwestern University. "We were able to show that the trend for lower bone mineral density seems to be associated with disease damage independent of steroid exposure." There may be ways to start compensating for this damage as soon as a diagnosis is made, the researchers said.

Finally, one study examined part of lupus' social toll. Edward Yelin, of the University of California, San Francisco looked at almost 900 people with lupus and found that while about 71 percent were working at the time of their diagnosis, only 46 percent were still in the labor force 12 years later -- a 48 percent drop. Among those who continued working, there were declines in the number of hours worked per week and the number of weeks worked per year.

"Work disability in lupus occurs much earlier in life and at much higher rates [than for other diseases]," Yelin said. "If you get a disease like lupus, then you leave work early in life and you also lose your long-term financial stability."

Also, because of the severity of the disease (seizures were one of the main reasons cited for inability to work), there were few opportunities to make accommodations in the work environment sufficient to let people keep their jobs, Yelin said.

For most people, lupus is a mild disease affecting only a few organs. For others, it may cause serious and even life-threatening problems. More than 16,000 Americans develop lupus each year. According to the Lupus Foundation of America, between 500,000 to 1.5 million Americans are living with lupus.

Lupus often causes inflammation of the skin, in the form of a rash or lesion. It's usually triggered by sun exposure.

"It doesn't have to be sun exposure like sitting on the beach. It can just be trips to the car that add up and produce this kind of problem," Dr. Joseph Jorizzo, professor of dermatology at Wake Forest University School of Medicine, said. "There's a reaction that occurs where the body's immune system, with certain cells called lymphocytes attack the junction of the outer part of the skin called the epidermis and the middle part called the dermis."

Thalidomide is a risky but successful drug used to treat lupus.

The result is a rash on the skin. Usually it can be treated by use of sunscreens and topical medications, but in more stubborn cases, doctors at Wake Forest University Baptist Medical Center in Winston-Salem use thalidomide.

Thalidomide was sold in the 1960s as an over-the-counter sleep-aid, but was banned after it caused severe deformities in the children of pregnant women who used it.

Patients receiving thalidomide therapy are placed on a low 100-milligram daily dosage, to be taken orally every evening. The treatment period needed to yield maximum health benefits is anywhere from 12 weeks to 16 weeks.

Researchers did note that 91 percent of study patients showed a favorable response to thalidomide within 8 weeks. The price for the 28-day course is more than $500, and it is reserved as a secondary line of therapy because of this significant cost to the patient.

There are some risks associated with the drug, however. This includes fetal birth defects, numbness, tingling, burning, prickling, increased sensitivity, drowsiness, dizziness, weight gain, abnormal menstruation cycles, constipation, headaches and nausea.

Doctors at Wake Forest University School of Medicine gave thalidomide to nearly 25 patients with lupus-related skin lesions. In 74 percent of the patients, the lesions disappeared completely. Thirteen percent of patients had 75 percent improvement and three had less than 75 percent improvement.

Earlier treatment and better drug development are on the horizon for lupus patients, thanks to a new panel of blood tests that promises to diagnose and track the autoimmune disease.

Researchers from the University of Pittsburgh's Lupus Center of Excellence and the Graduate School of Public Health have found that special protein fragments attach to red blood cells in unusual patterns in people with lupus. More protein binds to the cells during the times when symptoms get worse, known as flares.

The knowledge may provide a way of not only diagnosing lupus, but also anticipating flares of an otherwise unpredictable illness, said Dr. Joseph Ahearn, co-director of the lupus center. He presented the findings yesterday in New York at an international conference devoted to lupus and related disorders.

For the first time, lupus biomarker research "has really been put in a sensible form that is useful for the clinician," said Dr. Robert Lahita, conference chairman and chief physician at Jersey City Medical Center in New Jersey. "It will be very helpful to all of us in predicting lupus activity."

In lupus, the body inexplicably attacks itself, damaging joints, skin, kidneys, heart and other tissues. The condition is chronic and more common in women than men. According to the National Institutes of Health, African-American women are three times more likely to have it than white women.

Renee Walton of Beaver Falls was in her mid-20s when her symptoms began. For several months, she repeatedly caught colds and strep throat and spiked high fevers. Her joints ached and her fingers and feet became swollen.

Doctors admitted her to the hospital for several weeks to treat a presumed viral infection. She got better and went home, but soon afterward all the symptoms returned with greater intensity. She also developed a rash. Once again, she landed in the hospital. "It took between six months to a year before they came up with the diagnosis of lupus," said Walton, 40.

Partly because the disorder can mimic a variety of diseases, it takes an average of four years for the diagnosis to be made, said Dr. Susan Manzi, a study investigator and co-director of the lupus center. Patients may go from doctor to doctor, only to be told their problems are all in their heads.

"They know something is not right, but no one's really diagnosing them properly." Manzi said. "It's a lot of doctor hopping."

"We'd like to get to the point where the general practitioner would be be able to accurately diagnose the disease," Ahearn said.

In their search for lupus biomarkers, scientists are examining a biochemical pathway in the body called the complement system. Part of the body's disease-fighting immune system, complement is activated in immune reactions and inflammation.

Levels of some complement proteins that circulate in the bloodstream have been measurable for some time. When the pathway is activated, the parent compounds are broken into fragments that researchers previously have been unable to detect.

The Pitt researchers correctly suspected that the protein pieces could not be found because they attached to red blood cells instead of floating freely in blood vessels.

They also saw unusual patterns of fragment binding patterns among lupus patients, making it possible to diagnose the disease. The fragments remain stuck for the life of the red blood cell, about 120 days. They also attach to precursor cells called reticulocytes, which turn into red blood cells within a day or two.

"If you can look at their reticulocytes, you know what's going on immediately, right at that day and time," Ahearn explained. "If you look at all the red cells, you get a perspective over several months."

The researchers also found that lupus patients at risk for clotting problems were more likely to have protein fragments stuck on their platelets, which help make clots. Young women with lupus have a 50-fold greater risk of stroke and heart attack than their healthy peers, Ahearn noted.

Walton has dealt with seizures, rashes and hair loss, all because of lupus. Her right hip was replaced earlier this month and the other one was replaced last year because the medications she takes weakens her bones.

Walton, who is African American, wears sunblock and shades herself with a hat or umbrella because her skin is so sensitive to light. She has packed her bags to go on vacation only to end up in the hospital because the disease flared unexpectedly.

If the new test performs as described, "they could tell you when you're going to have flare. I think that would be very important." Walton said. "Maybe [other patients] won't have to experience some of the things I have experienced."

The tests could also aid the development of new lupus drugs. Because patients may take many medicines and the disease symptoms can vary widely between individuals, proving that an experimental drug actually works is a challenge.

As a result, pharmaceutical companies "are reluctant to put their drugs on trial because if we can't accurately give them an answer, they're wasting their time and their money," Ahearn said. The lupus biomarkers would provide a means of monitoring patients in clinical trials, providing a better assessment of a treatment's efficacy.