AARP - Segunda Juventud - health

Life with Lupus
By Teresa Burney

It was almost like getting a death sentence when Anita Gonzalez's doctor told her 30 years ago she had lupus. "He asked me if I knew what lupus was and I told him, 'No,' and he sat down and explained it to me," she recalls. "It was a 50-50 chance that I would live 10 years."

She won the coin toss. Her daughter didn't. Seven years after Gonzalez's diagnosis, Diana died of lupus at age 20.

Gonzalez, 65, is among a growing number of people who survive lupus for decades. Now, instead of preparing themselves for an early death, they struggle to learn how to live with a painful, incurable disease and the long-term side effects of treatments that can be as debilitating as the disease.

Lupus, officially called systemic lupus erythematosus (SLE), affects 1.4 million Americans. About 90 percent of its sufferers are women, and women of color-African Americans, Hispanics, Asians and Native Americans-are hardest hit, according to the New York-based S.L.E. Foundation.

People with lupus have overactive immune systems that attack healthy body tissue. Every organ can be affected. The disease's most common symptoms are exhaustion, painful or swollen joints (arthritis), unexplained fever, skin rashes, sun sensitivity, and kidney problems, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. Because there are so many symptoms, and they come and go, lupus can be difficult to diagnose.

"There is no one single blood test that is diagnostic for lupus," says Robert G. Lahita, M.D., Ph.D., and chairman of medicine at Jersey City Medical Center. "Patients can go for five or six or 10 years without the diagnosis being solidified."

‘It's difficult to diagnose, difficult to live with, difficult to treat’

Lupus progresses differently for each person: some may have a mild version, others may have a life-threatening version. There are periods when lupus is "quiet" and sufferers can live an almost normal life. Then there are "flare" periods when the disease becomes active.

"It's difficult to diagnose, difficult to live with, difficult to treat," says S.L.E. Foundation Executive Director Margaret Dowd.

Gonzalez would agree. But support groups, such as Charla de Lupus at the Hospital for Special Surgery in Manhattan, can provide acceptance, understanding, and inspiration.

Dámaris Rodriguez, a Charla program associate who was diagnosed with lupus 17 years ago, shortly after her son's birth, inspires Gonzalez. At age 36, Rodriguez has had both hip joints and a knee replaced, among other surgeries. In 1998, her heart stopped, she says. "It made me really realize how precious life is and that I need to stop complaining about little things," Rodriguez says. "Even though I have lupus, I try to live a normal life."

Having lupus means staying alert to symptoms, visiting the doctor often, taking medications faithfully, eating healthful foods, and getting plenty of rest. Those who learn about the disease and actively manage it tend to have fewer complications, health care providers say.

Lynn Overman, Ph.D., whose doctoral studies at the University of Alabama at Birmingham focused on the impact of telephone counseling for lupus patients, calls such people "active" copers, and others "passive" copers. Those who were active had better health status than those who weren't. More than half the passive copers in her telephone counseling group became active copers, she says.

"Sometimes it's as simple as people learning [through counseling] how to ask for help from their family members when they are not doing well," Overman says. "Sometimes people just need somebody to talk to." Finding someone to talk with and information about lupus is often more difficult for Hispanics because of language and cultural barriers.

Charla de Lupus is a sister program to LupusLine, a telephone support line at the Hospital for Special Surgery; both programs are funded by Rheuminations Inc. "We found the Hispanic community really seemed to be more responsive to the face-to-face contact and had more of a hesitancy to pick up the phone and talk to a stranger," says Wendy Doran, Charla de Lupus/LupusChat program coordinator.

To address the Hispanic community's needs, Charla de Lupus was founded in 1994. Some of its efforts include: a Spanish/English toll-free support and education line that matches callers who are living with the illness with trained volunteers who also have lupus; support groups; and visits to rheumatology clinics in New York City where volunteers chat with lupus patients.

In 1998, the S.L.E. Foundation of New York City also founded the New York City Lupus Cooperative and set up offices in East Harlem and the South Bronx. A third office is scheduled to open in Brooklyn this year.

Lupus sufferers receive education, referrals to doctors and social service organizations, and support at the sites. "We speak their language and we are in their community," says Pedro J. Santiago, program coordinator. "It is easier for a person to go down the street in their community and talk to someone in a non-threatening environment and get information in their own language."

While helping patients cope remains a big part of the S.L.E. Foundation's work, funding research for new treatments and a cure has become another strong focus, Dowd says. In 2000, the organization, in partnership with leading scientists in the lupus field, founded the Lupus Research Institute. The institute gives grants to scientists working on novel lupus research.

"We need to shake up the box, to have people looking at it from different angles," Dowd says. "Lupus has been a terribly ignored disease. There hasn't been a new treatment approved for this in over 40 years."

Doctors have gotten good at managing the disease with the few tools they have, but she says there is a lot of room for improvement.

Yet life with medical problems is better than the dismal prognosis patients faced 50 years ago, says Dr. Daniel J. Wallace, a rheumatologist and clinical professor of medicine at the University of California, Los Angeles who is based at Cedars-Sinai Medical Center. "Now, those with non-organ-threatening [forms] of the disease can live an almost normal life expectancy."

Treatments such as corticosteroids, kidney dialysis, improved antibiotics, better blood pressure-regulating medication, new chemotherapies, and stem-cell transplants have all helped extend the life of lupus patients, Wallace says.

The key to finding a cure will be finding the cause.

Researchers suspect lupus may be caused by several factors. Patients may be born with a genetic propensity toward the disease, which is then triggered into activity by hormones and environment.

"We really don't understand the disease yet," says Lahita, of the Jersey City Medical Center.

Now, find out where you can get help if you, or someone you know, are suffering with Lupus. Plus, get some tips on making the most of your visit to your doctor.

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