Lupus and its varied symptoms hide behind mistaken diagnoses

BY MICHAEL GRANBERRY

Allison Koeninger has had symptoms of lupus since childhood. (DARNELL RENEE/KRT)

What is lupus?

Lupus is a chronic autoimmune disease that causes the immune system to attack the body's own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood or skin. Researchers do not know what causes lupus. It is not infectious, rare, cancerous or AIDS-derived. Scientists believe there is a genetic predisposition to lupus, but it is known that environmental factors also play a role in triggering the disease. The Lupus Foundation of America estimates that about 1.5 million Americans have a form of the disease. Men and women of all ages can be affected, but lupus occurs 10 to 15 times more frequently among adult females than adult males. Source: American Lupus Foundation Source: American Lupus Foundation

DALLAS -- For Allison Koeninger, symptoms began as early as age 7. She felt aches and pains "and a lot of fatigue," and no one could figure out why.

"They would X-ray me, and nothing would show up," she says. "I even began to think I was imagining things."

Now 44, Koeninger failed to get the answer she was seeking until 1990, when she went to a dermatologist for a rash that began on the bridge of her nose and spread to her cheek. She remembers him saying, "I think you have lupus." He was right.

An archivist at the University of Dallas, Koeninger lives in Dallas and suffers from lupus, for which there is no cure. In her case and those of millions of others, lupus is often misdiagnosed.

About 1.5 million Americans suffer from it, and most of its victims are women. It's a chronic autoimmune disease that causes inflammation and tissue damage to almost every organ in the body, including the brain and heart. Its symptoms, which tend to arrive with devastating severity, include achy and swollen joints, fevers, fatigue and obvious skin rashes.

"Lupus is a classic example of an autoimmune disorder in which your own immune system has become imbalanced," says Dr. Edward K. Wakeland, director of the center of immunology at UT Southwestern.

Wakeland received a recent research grant from the Alliance for Lupus Research, or ALR, which was founded in 1999 for the purpose of raising money to prevent, treat and eventually cure lupus. The Lupus Foundation of America is also aggressively involved in raising funds.

"Lupus can lead to a whole variety of problems, including kidney abnormalities, rashes, photosensitivity, neurological disorders, vascular disorders ... and there's currently no good way to treat it," said Wakeland. "Oftentimes, the therapy is almost as bad as the disease itself."

In Koeninger's case, steroids caused her to gain weight and hit her with a severe case of depression and anxiety. Anti-inflammatories tore up her stomach for 10 years. "I can no longer take them, because my stomach is just shot," she says.

Dr. Nancy Olsen, professor of medicine at the University of Texas Southwestern, has treated lupus patients for years. The worst scenarios she sees usually involve kidney failure, which "is not as dire as it used to be," she said. "We've gotten a lot better at treating it." Koeninger is among the relatively fortunate who have never suffered kidney problems.

Patients "usually come in with one of several symptoms," said Olsen. "It's a very heterogenous disease, so it affects people differently. People often come in with a skin rash, which can be on their face. Others have joint pain, arthritis-like symptoms. It's usually less intense than rheumatoid arthritis, but there can be swelling or pain.

"Some patients come in with high blood pressure, then we find their kidneys aren't working. And then a biopsy will show lupus in the kidney. Most people don't have all of the symptoms."

Of the 1 in 2,000 it victimizes, it targets women at least 10 times as often as men, said Wakeland. And no one knows why. One of the men who died from lupus is famed CBS broadcaster Charles Kuralt.

"The disease tends to be much more severe in women who are reaching their child-bearing years," he says. "The frequency and severity is also much more prevalent among African Americans and Hispanics. They more commonly get it, and when they do, it's more commonly severe among those populations."

Just as no cure exists for lupus, neither is there an identifiable cause. Lupus patients often undergo the frustration of suffering swelling of the joints or bruising, only to have the symptoms subside by the time they get to a doctor's office. It's often wrongly diagnosed as arthritis.

Unpredictability, Koeninger said, makes it difficult to cope with. "You can wake up today feeling great," she says, "and wake up feeling horrible tomorrow. It's hard to make long-term plans. I always take out vacation insurance, because I never know when a vacation comes around if I'm up to going."

And one of its saddest aspects is the suspicion it sometimes arouses in others. "Most of the time, you don't look sick, and people just don't realize how much you're suffering. But believe me," she said, "you are suffering."