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Autoimmune disease turns woman's antibodies against her own body
After Laura Clark of Poplar Bluff, Mo., gave birth to her daughter in 1980, her overall health took a downward spiral.
She endured constant pain in her abdomen and legs. She suffered nonstop fatigue. No one could pinpoint the cause until she was found to have Raynaud's disease, a condition that causes fingers to turn white or blue from cold.
"The Raynaud's clicked in someone's mind while they were testing me," she said.
She had lupus.
Lupus is a chronic autoimmune disease that afflicts mostly women of childbearing age, according to the Lupus Foundation of America in Washington, D.C. It is related to rheumatoid arthritis, and frequently causes pain in the joints and connecting tissues of the body. Lupus is two to three times more common among women of color, but no one knows why. Only about 10 percent of lupus patients are men.
With lupus, the body's immune system loses its ability to tell the difference between foreign substances -- antigens -- and the body's own cells and tissue. It produces antibodies that target the body's healthy tissue. Raynaud's disease is one of the symptoms.
Ten years after she was diagnosed with lupus, the disease caused Clark's blood vessels to become inflamed which clogged her heart, requiring surgery to insert a stent.
"By the grace of God I did not have a heart attack," she said.
A laboratory medical technologist and paralegal, Clark is also the director of the Lupus Support Group, which meets six times a year at Poplar Bluff Regional Hospital and is the only support group for lupus patients in Southeast Missouri.
No known cause
No one knows what causes lupus and there is no cure, according to the Lupus Foundation. Some scientists believe lupus is genetic. Stress plays a large part, Clark said, and so do hormones.
Earlier this month, a study published in the New England Journal of Medicine showed that oral contraceptives did not increase the risk of flares among women with lupus, as previously believed.
Clark said that does not apply to all women. She was discouraged from using oral contraceptives because hormones have been known to aggravate it. So does pregnancy -- that's when most women discover they have it, she said.
"There are so many facets to this disease," she said.
Because there is no specific test to diagnose lupus, some patients are diagnosed earlier than others. In Clark's case, it took 12 years from the time she gave birth and first began having mysterious symptoms to final diagnosis.
The Lupus Foundation estimates that 1.5 million Americans have a form of lupus. Approximately 35 percent of lupus patients surveyed have received disability benefits and 28 percent are presently on disability. Another 38 percent have stopped working due to complications of lupus.
Clark says she works more than 40 hours a week, but has learned to back off when her symptoms flare up.
Patients are treated with anti-inflammatory drugs, corticosteroids and antimalarials. Clark has been taking transplant drugs and methotrexate to help suppress the symptoms. Like other lupus patients, she sees a physician every two months and, as is common therapy, he changes her treatment after every visit.
"I was scared when I had to go on methotrexate and transplant drugs, but they have helped me so much," she said.
Lately, lupus has caused pain in her face and tongue -- "like someone is trying to pull my tongue out of my head" -- but a couple of hours of sleep usually help. Recently she had an outbreak of itchy lesions all over her body. Prednisone helped. She doesn't take pain medication.
"I know the risks," she said.
One of the most difficult aspects about lupus is knowing that survival is 80 percent after the first 10 years following diagnosis, and it decreases after that. Clark said lupus began attacking her blood vessels almost exactly 10 years to the day of her diagnosis in 1992.
Support and faith have played a major role in coping with lupus. Clark credits God for guiding her to the support group she leads.
"Everyone tells me that it is so good to have other people with lupus to talk to, for them to know what they're dealing with and to feel they are not alone," she said. "You can deal with it so much better when you know what is causing it."
Clark says she prays that she will live long enough see her daughter grow up and be able to care for her aging parents; her father has leukemia and she wants to be able to care for him.
And she looks ahead to "the miracle of a cure. I know God makes miracles happen every day."
335-6611, extension 160
Common symptoms of lupus
Achy or swollen joints
Skin rashes, especially in the shape of a butterfly across the cheeks and bridge of the nose
Excessive protein in the urine
Abnormal blood clotting
Fingers turning white and/or blue in the cold
Mouth or nose ulcers