Oft-misunderstood lupus comes out of the shadows
Lupus is getting fresh attention in the medical and research communities.
Detroit Free Press
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 handheld 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 1/2 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.
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.
Sharon Harris, whose college graduation jubilation was cut short by lupus, eventually became an ardent advocate for lupus awareness by working as the marketing representative for the Lupus Alliance of America — Michigan Indiana Affiliate.
She advises people who suspect they have it to see a rheumatologist who specializes in lupus and to find support through groups such as the Lupus Alliance.
"We need to talk about it more because lupus can kill you if you don't get it treated," Harris said. "But with proper care you can manage this disease. It's not easy. No day is the same. But you can manage. It's not a death sentence."
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WHAT IS LUPUS?
Lupus symptoms vary from person to person and are mild to severe. It is considered a chronic life-threatening disease because it attacks organs of the body, particularly the kidneys.
According to the Lupus Research Institute and other experts on lupus, most people with the disease can have a normal life expectancy if they are properly treated, follow their doctor's advice and have a healthy lifestyle.
While no two cases are exactly alike, there are some common symptoms, which may not all occur at the same time. When several do manifest at the same time, it is known as lupus flare. Among the symptoms:
Swollen, stiff and painful joints
Fever over 100 degrees
Rashes on the skin, often in a butterfly-like pattern
Sensitivity to the sun
Swelling around the ankles
Chest pain with deep breaths
Unusual hair loss
Pale or purple fingers from cold or stress
Source: Lupus Research Institute
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Lupus Alliance of America, Michigan Indiana Affiliate, 26507 Harper, St. Clair Shores; www.milupus.org, 800-705-6677.
Lupus Research Institute, www.lupusresearchinstitute.org, 212-812-9881.