For Allison Koeninger, symptoms began as early as age 7. She felt aches and pains "and a lot of f... Lupus tricky to diagnose,
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," said Dr. Edward K. Wakeland, director of the center of immunology at UT Southwestern and holder of the Edwin L. Cox Distinguished Chair.
Wakeland is one of the three local beneficiaries of a $500,000 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.
ALR's founder is Robert Wood Johnson IV, owner of the New York Jets of the National Football League. The heir to the Johnson & Johnson pharmaceutical fortune, Johnson began seeking a cure in 1999, when his daughter, Jaime, then 13, was found to have lupus. Johnson pays all of ALR's administrative costs, so that public donations go entirely to research.
"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.
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, arthritislike 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. Some estimates put the ratio as high as 14 to 1. 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. That may be the reason 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."
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.
Symptoms can include achy joints, frequent fevers of more than 100 degrees F, arthritis, prolonged or extreme fatigue, skin rashes, anemia, kidney problems, chest pain during deep breathing, a butterfly-shaped rash across the cheek and nose, sun or light sensitivity, hair loss and abnormal blood clotting.
The Lupus Foundation of America estimates that approximately 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.
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