Originally created 05/22/01

Shedding light on lupus



The excruciating leg pains that wake Vera Butler in the middle of the night will pass - for a time.

But she has lived with the on-again, off-again pain, the fevers, the swollen lymph nodes, the achy joints and the fatigue for a decade.

For four of those years, doctors couldn't figure out what was wrong.

"They ran every test imaginable and couldn't find anything wrong with me," the Augusta woman said.

Finally, after she developed a tender bald spot behind one ear, a dermatologist performed a biopsy and a test for lupus. When the test came back positive, Mrs. Butler was terrified of the mysterious disease.

"It scared me, because I knew nothing about lupus," she said. "I didn't know if I was going to die in a few months."

That's a common fear, despite the fact that most cases of lupus are treatable. Mrs. Butler is one of an estimated 3,500 people in Georgia with lupus, a disease that leads the body's immune system to attack its own tissues. Nationwide, more people have lupus than have AIDS, sickle cell anemia, cerebral palsy, multiple sclerosis and cystic fibrosis combined, according to the Lupus Foundation of America.

But many people don't even know it exists.

"It takes a while to get the word out," said Phyllis S. Keeler, executive director of the foundation's Georgia chapter. "I think we're making progress, but it's still slow going."

"It's basically an inflammatory disease that's going to affect many different organ systems in the body," said Walter Moore, chief of rheumatology services at the Medical College of Georgia. "Most typically, it affects the skin and the joints. But it can really manifest itself in so many different ways - some people believe there are at least four or five categories of people with lupus. That's what makes it so difficult to diagnose."

The majority of people diagnosed with lupus are women age 20-35. During the child-bearing years, women with lupus outnumber men nine to one, Dr. Moore said. One theory is that hormones such as estrogen trigger flare-ups of the disease.

Other researchers think it may be triggered by a virus, by ultraviolet rays from sunlight affecting DNA, by certain drugs. According to one theory, the natural process of cell death - old cells in the body dying off and being replaced by new ones - somehow goes awry, creating a protein that the body's immune system attacks, Dr. Moore said.

Raising public awareness of the disease and funds for research is a priority for foundations such as the Lupus Foundation. Knowledge is slowly spreading, thanks in part to celebrity work and high-profile organizations such as the Dorough Lupus Foundation, set up by the family of Backstreet Boys member Howie Dorough after his sister's death from lupus in 1998.

The foundation sponsors an annual fund-raiser that attracts pop acts, gets publicity in teen magazines and has many teen-agers more informed about the disease than their elders. Internet fan sites for the Backstreet Boys often offer information about the disease, fund-raisers and links to the foundation's Web site.

Still, too many people are in the dark about the disease, activists say. Mrs. Butler, who has been hospitalized about once a year since her diagnosis, knew she had to do something to spread the word when one of her nurses asked her for more information about lupus. Her son's girlfriend said that the only information her nursing class received about lupus was how to recognize a characteristic "butterfly" facial rash, Mrs. Butler recalls.

But symptoms of the disease also include joint and muscle pain, fatigue, sensitivity to sunlight, hair loss, mouth sores and sensitivity to cold. The constellation of problems is so wide that it can take doctors a long time to pinpoint the problem - some experts even doubt the efficacy of "lupus" as a diagnosis at all.

"Where I see frustration is that the American College of Rheumatology has a set of 11 criteria for a diagnosis of lupus - physical tests, medical history, laboratory tests - and if you have four of the 11 criteria you can classify someone as having lupus," Dr. Moore said. "But the disease can be substantially different for those who have different criteria. In many respects it's like a jigsaw puzzle. The criteria are like the corner pieces of the puzzle. Then you have to fill in the rest of the border. Then you have to fill in the center of the puzzle."

It's easy for the early stages of lupus to be missed because the symptoms - primarily aches and fatigue - are common results of a busy lifestyle, he added. Further muddying the water is the possibility of a false positive diagnosis from a lab test called an anti-nuclear antibody test. The positive result could be caused by an old infection or an inoculation.

"We tend to see a lot of frustration, particularly when individuals don't have the full-blown picture of lupus," Dr. Moore said.

Mrs. Butler's case is classed as "chronic," and she considers herself lucky. A friend died recently after suffering kidney damage from lupus. Organ damage is one of the biggest dangers of the disease.

True to the disease's hidden form, Mrs. Butler didn't even know lupus was behind her friend's problems until about three weeks before the other woman's death - despite the fact that her friend was diagnosed in 1972.

To spread information about the disease, Mrs. Butler has coordinated an "Educate and Inform Banquet" in conjunction with the Georgia chapter of the Lupus Foundation. The banquet Saturday will include a panel discussion with an array of doctors and a keynote speech by Rosemary Graham, an Atlanta woman with lupus who writes about the disease for medical journals and speaks to groups about it. The organization is trying to offer "scholarship" tickets for teens with the disease, Mrs. Butler said. At least eight area teen-agers have the disease, she said.

Symptoms

Lupus is an inflammatory disease that leads the body's immune system to attack its own tissues. Symptoms may include joint and muscle pain, fatigue, sensitivity to sunlight, hair loss, mouth sores, sensitivity to cold and swollen lymph nodes.

Awareness event

What: Lupus Foundation of America's Educate and Inform Banquet

When: 6-10 p.m. Saturday

Where: Augusta-Richmond County Civic Center, Rooms A and B, lower level

Tickets: $25

Contact: Vera Butler, 772-9001

Reach Alisa DeMao at (706) 823-3223 or ademao@augustachronicle.com.