Often-misunderstood lupus out of shadows

Sharon L. Harris is marketing director of the Lupus Alliance of America Michigan/Indiana Affiliate.

DETROIT – The day Sharon Harris graduated from Florida A&M University was supposed to be one of jubilation.

But Harris was exhausted and weak.

She attributed it to the stress of final exams, preparing for graduation and working three part-time jobs.

But the moment her mother arrived from Detroit that day in 2001, she knew something was seriously wrong. Just one look at her daughter’s face told her it couldn’t be only stress. In addition to exhaustion, Harris’ skin was blotchy and discolored.

When she and her mother returned home, Harris, now 33, went to see a dermatologist, who immediately suspected lupus. “What is lupus?” Harris asked.

She soon would find out. The autoimmune disease, which attacks various organs of the body, is hereditary, even though Harris knows of no one else in her family who has it. Lupus eventually made Harris so weak and crippled that she could hardly walk up stairs or open a can with a hand-held opener. The disorder strikes women more than men, and African-American women are most at risk.

“It’s America’s most common, least known-about disease,” said rheumatologist Dr. Patricia Dhar, assistant professor of internal medicine at Wayne State University.

That is starting to change, partially because newer tests are better able to detect it, and partially because several celebrities, among them Seal, Lady Gaga, Toni Braxton and, most recently, Nick Cannon, have been diagnosed with it.

It’s also getting fresh attention in the medical and research community.

A 2011 University of Michigan study of Washtenaw and Wayne counties showed that African-American women are more likely to get lupus than other women.

“Overall, 1 in 1,000 women have lupus and almost 21/2 times as many African-American women, about 1 in 500 African-Americans, have lupus,” said Dr. Joseph McCune, director of University of Michigan’s lupus clinic and one of the authors of the study.

It is also more common in women of Hispanic/Latina, Asian and American Indian descent. Several studies are under way to determine why the disparity exists.

Race also plays a role in how early the disease tends to appear and its severity.

Black and Hispanic/Latina women tend to develop symptoms at an earlier age than other women, and African-Americans have more severe organ problems, especially with their kidneys.

The Centers for Disease Control and Prevention reports that, conservatively, 322,000 to more than a million people in the United States have lupus.

The exact cause is unknown. “We do know it is caused by a number of abnormal genes working together,” said McCune. “We know it can be inherited from either parent and it can remain dormant forever. Some trigger is required to make lupus manifest itself.”

Those triggers can be a viral infection, exposure to a chemical or drug, or even stress and complications associated with childbirth. Although women of all ages get lupus, it’s most common in women in their childbearing years.

The symptoms can vary so much from person to person, and even from day to day, that it’s sometimes difficult to immediately detect.

“Lupus patients are very complicated,” said Dr. Barnard Rubin, the rheumatologist who’ll pilot a new interdisciplinary lupus clinic beginning next month at Henry Ford’s main campus in Detroit. “But tests are much more widely available, and the price of testing has dramatically dropped.”

The good news is that better testing and better medications have made it possible for people with lupus to live long and productive lives, doctors say.

Dhar said it is essential for lupus patients to make lifestyle changes to help manage the disease. Among them:

Take medications as prescribed with recommended monitoring of those drugs.

Avoid direct sunlight, which can be a trigger.

Eat a diet high in fruits and vegetables; low in fat and salt.

Get plenty of rest and avoid stress as much as possible.

She also advises lupus patients to find a support network because frequent illness can result in depression without supportive family or a support group.