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Oft-misunderstood lupus comes out of the shadows

April 12, 2012 - 19:31 By Korea Herald
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 December 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’s 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 would soon 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 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.
Antionette Bostic James (right), 42, and her daughter Christina Hayes, 24, talk about living with the disease, lupus, in her Southfield, Michigan home. (Detroit Free Press/MCT)

Nationally, the Centers for Disease Control and Prevention reports that lupus is three times more common in black women than in white women. 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 CDC says 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.

“We know that less than half of all identical twins both get lupus,” McCune said.

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 on West Grand Boulevard in Detroit. “But tests are much more widely available, and the price of testing has dramatically dropped.”

Wayne State’s Dhar described diagnosis this way: “It’s like putting pieces of a puzzle together. There’s not one test. There are tests you do after you have a high suspicion of lupus based on symptoms and health history.”

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 medications.

― Avoid direct sunlight, which can be a trigger.

― Eat a diet high in fruits and vegetables and 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.

“If depression gets a hold of you, you may get worse because you stop taking your meds, which just makes it worse,” she said.

Christina Hayes, 24, of Westland, Mich., was diagnosed with lupus in 2007, during her second year at Eastern Michigan University. Since then, she’s been hospitalized almost 20 times and came close to death after a seizure last summer. She now undergoes chemotherapy once every six months to control her lupus.

Chemotherapy often works for lupus patients because it suppresses the white blood cells that make antibodies that trigger lupus flares, said McCune. “Other inflammatory reactions are also reduced,” he said. “This enables control of inflammation in vital organs such as the kidney that may not respond to less powerful medications.”

Hayes attributes her health now to good medical care at the University of Michigan Health System, faith, a supportive family and her determination to live a full and stress-free life.

“I try not to stress about anything,” Hayes said. “I try to enjoy life, everything about life. Breathing. Looking at the trees. I know tomorrow is not promised; you have to live life to the fullest.”

Her mother, Antoinette Bostic-James, 42, of Southfield, Mich., was diagnosed with lupus three years ago. She, too, was experiencing tiredness, headaches, muscle pain and general discomfort. But even with a daughter who had had severe bouts with lupus, neither she nor her doctors initially suspected that might be the culprit.

Now Bostic-James takes anti-inflammatory medications to keep her lupus under control.

Both said one of the challenges of the disease is that lupus patients don’t always look sick.

“People tell you all the time you don’t look like you’re sick,” Bostic-James said.

By Cassandra Spratling

(Detroit Free Press)

(MCT Information Services)