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What Hispanics Need to Know about Lupus

This October is Lupus Awareness Month and, as Hispanic families celebrate Hispanic Heritage Month (September 15-October 15), it is a good time to focus attention on the signs and symptoms of lupus—a disease that disproportionately affects people of Hispanic origin.

As a Latina living in the South Bronx in her youth and throughout her twenties, Maggie Gonzales found herself constantly tired and often so sick she could not get out of bed—but for no explainable reason.

Her jobs as a teacher and a mother of two children left her exhausted, but no more than any other busy young mother, she thought. That was, until one morning, she woke up unable to move, with a raging fever and swollen joints. By the end of the day she was lying in a hospital bed.

It was to be the first of many hospital stays without a clear diagnosis for her condition. The mystery persisted until finally, a doctor put all the pieces of the puzzle together. Maggie had lupus.

"I had many of the symptoms, fever, fatigue, sun sensitivity, swollen joints," recalls Maggie, now 46 of Teaneck, NJ. "And my father and sister had lupus, but I didn't know enough about it—I didn't realize I was at risk."

As one of the nation's least recognized major diseases, lupus affects an estimated 1.5 million Americans—90 percent of whom are women in the prime of their lives. Lupus is the common name for systemic lupus erythematosus (SLE), a disorder in which the body's immune system attacks its own healthy tissues and organs, causing pain and inflammation. Lupus can target the heart, brain, kidneys, and lungs—leading to serious or potentially fatal complications such as heart attack, stroke or kidney failure.

There is also evidence that Hispanic women (and African Americans) experience a higher rate of lupus, have more serious complications and higher mortality rates than their Caucasian counterparts. And after 15 years of investigations around the country, researchers have found that Hispanic women with lupus are more likely to suffer kidney damage and a rapid rate of kidney failure.

Because lupus often starts with something as simple as a rash, fever or fatigue, people can live with the disease for years without knowing they have it. The disease can be even more confusing because those affected usually experience periods of disease activity, known as a flare, and periods of remission. Many people don't know they have lupus until the disease is advanced and damage to organs has occurred.

"When I was finally diagnosed, the doctor said to me, 'You must have had lupus for a long time for it to be this bad, to be so out of control,'" Maggie adds. "That's how misunderstood and unrecognized lupus is." Since receiving her diagnosis, Maggie takes many treatments to help manage her disease. She tries to prevent flares by staying out of the sun, and limits her activities to conserve energy.

Like Maggie, many women with lupus need help and support in coping with the anxieties and frustrations that often accompany daily living with a chronic illness. From crisis intervention, doctor referrals, and support groups to educational materials, entitlement assistance, and emergency grants, the S.L.E. Lupus Foundation's programs and support services have helped countless patients and their families cope with lupus. Of particular interest to Hispanics is the Foundation's community outreach program, The Lupus Cooperative of New York (LCNY), which offers bilingual professional and patient services to women of all ages in community centers in Northern Manhattan and the Bronx.

To learn more about lupus in either English or Spanish, contact the Lupus Cooperative of New York, Northern Manhattan Division: 212-289-9811 or the Bronx Division: 718-620-2555.