Living with lupus: although there is no cure, many people are making lifestyle adjustments to fight the disease and improve their sense of well-being

Sabrina Nixon is a three-time survivor.

Since 1999, she has had three debilitating bouts with lupus--each racking her body with extreme pain and fatigue. In 2005, Nixon had her worst episode with the disease, a chronic autoimmune affliction that can imitate other illnesses and one that left her unable to walk or talk. "I was near death," says Nixon. "To this day, I really cannot recollect a lot that has happened. My mom has to remind me of different things that went on."

At a Chicago coffee shop, between dainty sips of green tea, Nixon, a soft-spoken single mother, recalls being overcome with a series of mysterious maladies, including fatigue, swollen fingers, painful joints and memory loss. She struggles to remember the details of a subsequent two-month hospital stay where she could only listen to doctors discuss her condition with her mother, who had to make medical decisions for her. Eventually Nixon went into rehab for a month, where she had to relearn motor and speech skills.

Today, Nixon is looking younger than her 39 years. A former resident of the Cabrini Green public housing project in Chicago, she's an author of two books, and has resumed classes part-time at a community college. The mother of two autistic sons, Kameron, 8, and Kevin, 13, has honey-colored skin, which is devoid of the "lupus patch," a butterfly rash that often distinguishes victims of the disease. And she's happy to display her healthy head of hair--an asset that was once stolen by the ravages of the disease. "God has given me a second chance at life," she says.

UNDERSTANDING LUPUS

Today, experts estimate that lupus affects 1.5 million Americans, primarily young women between 18 and 24. Left undiagnosed, the illness can take its victims through a physical and psychological nightmare and put them more at risk for heart disease, according to several recent studies. But African-American women die from the disease two to three times more often than Caucasians. Indeed, according to a report published by the U.S. Centers for Disease Control and Prevention in 2002, deaths attributed to lupus among Black women between 45 and 65 increased dramatically over the 20-year period of the study.

Known as "the great mimicker," lupus often is disguised by other ailments such as arthritis, arthralgia (achy joints) or anemia. Nixon, who eventually learned that she had systemic lupus erythematosus, which can impact vital organs, the nervous system, joints and the skin, wasn't immediately diagnosed with the disease.

Neither was Denise Nayla Rolle, who began having joint pain in her 20s. She was a college student in Harlem, N.Y., on her way to Italy on a fellowship when pain inexplicably gripped her body while she was out preparing for her trip. She hailed a cab to a nearby hospital, where she stayed for a week. "I did not think anything of it," says Rolle. "I just went on with my life."

From 1978 to 1992, when a diagnosis of discord lupus (which affects only the skin) was finally made, she continued to experience painful flare-ups. Doctors didn't know what to make of her symptoms, which they diagnosed as being autoimmune-related health illnesses such as mixed connective tissue disease and fibromyalgia. "It can be frightening to not have a diagnosis," says Rolle, whose life was greatly impacted by the disease. "I loved to dance. [Lupus] restricted my activity. Standing for long periods of time was difficult. You can't continue like you once did."

That was especially true for Candace Baptiste of New York, who once ran 6 miles a day and was a triple threat--playing on her high school's volleyball, softball and basketball teams. After Baptiste began to experience knee problems, she was sent to a specialist, who recommended that she see a psychologist after he was unable to find a medical reason for her joint pain. It wasn't until she was 19 years old and in college that she learned she had lupus.

"The doctor came in, and he was very cold and callous," she recalls. "He told me, 'You have systemic lupus erythematosus [SLE].' He didn't explain what it was. My only knowledge of the disease was a poster that I had seen previously about lupus, which had a picture of an old Latin woman on it."

In 2003, at age 22, Baptiste's kidneys began to fail. To avoid renal failure, she received a kidney transplant from her father, Eugene Baptiste, earlier this year. Her ordeal with lupus has prompted Baptiste to film a documentary on women and lupus. She also works through the SLE Foundation to speak to groups about the disease.

The key to finding a cure for lupus lies in understanding what causes it. The disease can have different symptoms in each individual, according to Joan T. Merrill, M.D., of the Oklahoma Medical Research Foundation, which has done extensive research on the disease. She believes that factors such as environment and genetics may cause the illness. However, she says, Black and Asian women suffer most from the disease, even though there are some cases of Caucasian women with extreme cases of lupus. Lupus is 10 times more common in women than in men. "That tells us that [women's] hormones can create a more permissive situation for lupus," says Dr. Merrill.