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May 24, 2001
By: Sara Nso
State Capital Bureau
Links: HB 106

JEFFERSON CITY - Lupus is a strange and tremendous disease, for which there is no known cure.

It mainly affects women.

One day a person feels fine and the next day she can't get out of bed. She may have such a pain that she spends the whole night in the bath tub, crying as she works to keep the water as hot as she can stand it. Another night, for no discernible reason, she may feel well enough to go dancing.

Lupus is a chronic, inflammatory disease that affects different parts of one's body. For some unknown reason, the auto-immune system gets permanently out of whack.

With lupus, the body's immune system attacks a person's own tissues. It may waging war against one's skin, glands, bone marrow, blood, connective tissue, or such organs as the kidneys, heart, lungs, or brain.

Sometimes thee only symptoms may be joint pain or that lupus rash on nose and cheeks. Moreover, lupus causes depression. So do some of the medications that treat lupus.

The most common treatments for lupus suppress the entire immune system using toxic drugs, increasing the opportunity for serious infections, fragile bones, high blood pressure, sterility and cataracts.

The symptoms are confusing, contradictory, and ever-changing. This way, patients are often wrongly diagnosed by the physicians as hypochondriac. A victim may feel pain in the hands and then suddenly become almost symptom-free, without having the slightest idea why symptoms appear or disappear. That's the reason lupus is called the disease with 1,000 faces.

"I may not look as I feel inside," said Debbie O'neal, nurse at Boone County Hospital and lupus patient. "When people tell me that I look fine, I feel frustrated because they cannot understand the things I'm passing through. Only people with lupus know what it is like."

Whatever the symptoms, lupus is a chronic and as yet incurable disease. lupus patients have to learn how to live with pain and how to react to doctors, when they contradict each other.

"The physicians could not diagnose my disease during years," said O'neal. "Sometimes doctors cannot do more than what you can do for yourself."

O'neal is a lupus support group leader in Columbia, who throughout the years has learned that lupus patients need to know some little things, such as having tinted windows to protect themselves from the sun, in order to increase their quality of life.

"I have read a lot about the disease and I have learned to understand what happens in my body," said O'neal. "I can listen to my body now that I know what's wrong."

Lupus is a chronic disease and early diagnosis can help the patient to accept it and learn to deal with it.

"I would have liked to know that sun exposure was terrible for my disease, when I was twenty and loved to be under the sun," said O'neal. "Now I'm 47 and my goal is to live with lupus and not to die with it."

The only way of fighting the disease is knowing more about it and that's the objective of a bill passed by Missouri's legislature to establish a lupus program in Missouri's Health Department.

Under the new program, if signed by the governor, the department will monitor the incidents of lupus occurring throughout the state, promote research, identify medical professionals and providers, and increase public awareness.

"The number of persons who suffer lupus in the state has tripled," said Sen. Mary Bland, D-Kansas City, who sponsored a similar proposal in the Senate. "We want the program into the Health Department, because we see the importance of addressing this need."

According to the National Institutes of Health, nine out of ten people who have lupus are women. It often first appears during the childbearing years and it's three times more common in black women than in white women. It's also more common in women of Hispanic, Asian, and Native American descent.

"With this lupus program we are giving only a baby step," said the bill's sponsor -- Rep. Connie Johnson, D-St. Louis City. "We need to know how effective these programs are, before making a big deal of them, because we are facing a budget deficit."

The program will promote research about the disease in order to better fight it. While new information about the disease is coming, lupus patients face their own daily battle against lupus.

"Lupus has affected my lungs and heart and, although I'm still young, I have shortness of breath, and fatigue from the heart valves," O'neal said.