Living With Lupus - finding the right amount of exercise and the right combination of medications

Ebony, July, 2001 by Charles Whitaker

Victims of the debilitating disease, which is more prevalent among Black women, tell how to manage the life-altering illness

FOR 36-year-old Juliette Moore, the past 16 years have been a journey to heightened physical and emotional awareness. That journey, however, has also been a physical and emotional roller-coaster ride as Moore learned to live with and combat the effects of lupus, the devastating autoimmune connective tissue disease that disproportionately strikes African-American women.

Since she was diagnosed with the disease as a 20-year-old college student, Moore, a consultant with a training and development firm in Columbus, Ohio, has learned to stave off the assorted and sometimes debilitating symptoms of lupus, including the chronic shortness of breath and the fatigue that are so often associated with the disease. She has become more attuned to her body and the warning signs of incipient "flares"--the episodes in which the many symptoms of lupus become more prevalent. More importantly, she has learned that the effects of the disease, once considered a slow, painful march to early death, can be diminished by paying attention to your body and taking a proactive role in your treatment.

"Lupus has certainly affected my life, especially my working life," says Moore, who maintains a four-day workweek in order to prevent fatigue. "But if you have the form of lupus that I have, it certainly is not a death sentence. It can be managed. You just have to listen to your body and try to take care of and control of your life."

Approximately 400,000 Americans suffer from lupus, with Black women making up 32 percent of the victims. Lupus, in fact, is four times more likely to strike African-Americans than Whites.

In the past 10 years, considerable advances have been made in the diagnosis and treatment of lupus, still the disease remains something of a mystery. Its cause is unknown. Though most researchers believe that genetics is the chief indicator (the disease tends to run in families), some suspect that environmental factors may also play a part.

The symptoms of lupus are varied and mutable, contributing not only to the shroud of mystery surrounding the disease, but to the agony of living with it as well. Lupus can affect the skin and kidneys, blood vessels and joints, the nervous system, heart and other internal organs. While lupus sufferers are generally young women of childbearing years, the disease often leaves them chronically fatigued--their lung capacity severely diminished--their joints stiffened with various forms of arthritis. They may experience hair loss, anemia, ulcers in the mouth or kidney sediment.

"Lupus can be as mild as just a bit of arthritis, or severe enough to land patients in the intensive care unit with sudden fluid building in the lungs or collecting around the heart," says Dr. Keith Gilmer, a a board-certified rheumatologist in Rockford, Ill., who treats many lupus patients. "Despite the advances in diagnosis and treatment, lupus can still be a significant and devastating problem. And it seems to be even more devastating in African-Americans, who are more susceptible to the complications of lupus such as the effects of hypertension."

Among the most trying and difficult times for many lupus sufferers are the months and often years leading to an initial diagnosis. Because the disease can affect so many organs and mirror so many other maladies, general practitioners, who may not see many lupus patients, sometimes fail to recognize its symptoms. As a result, some lupus patients suffer through a long odyssey of treatment before the disease is ever accurately diagnosed.

Such was the case with Halline Cherry, a 40-year-old mother of two, who for eight years was treated for everything from migraine headaches to thyroid disease before her lupus was diagnosed in 1998. The fast and frequent changes in her condition made her question her mental as well as physical health. "With lupus, things change so quickly. I would call the doctor and say this is what's going on with me, and by the time I got there, that was not the problem anymore," she recalls. "And so you begin to wonder, `Am I really sick? What oh earth is wrong with me?' It's unnerving."

Getting an accurate diagnosis, however, is just the first step in the campaign to learn to live with lupus. The next step is understanding the disease and its treatment. Currently, patients with mild to moderate forms of lupus are treated with a daily cocktail of medicines--in some cases as many as 15 pills a day--that may include one of several forms of antimalarial drugs and steroids. But many longtime lupus patients caution against swallowing everything your doctor may prescribe without knowing its side effects or without trying to divine whether other drugs with lesser side effects might be equally effective in your course of treatment.

"You have to learn to be your own health advocate," says Juliette Moore. "You can't be afraid to ask questions or even disagree with your doctor if you think the side effects of the medicine are not quite worth it."