Sunday, April 19, 2009

Lupus and seizures?

Only in retrospect could Wendy Rogers recognize the early, somewhat mundane, symptoms: strange rashes and redness around her face, little pimples on the bridge of her nose.

In college, she had an episode of extreme dizziness, almost vertigo, and spent a week undergoing tests and an MRI.

"The doctor told me I had a brain tumor," the Torrance woman said. "I knew I didn't have a brain tumor. Are you crazy?"

Turns out, she was right. But the diagnosis, which didn't come until years later, wasn't much better — Rogers, 36, has an incurable autoimmune disease called lupus. Not knowing much about it, she says it didn't sound so bad at first.

That was before the grand mal seizures, months in the hospital, chemotherapy, kidney failure, dialysis, plasma treatments and a blood transfusion. She currently takes two dozen medications.

The emotional carnage was no less painful — she lost her marriage and her career as a teacher.

"It's been hard," she said. "I've had to give up a lot of things. It's been worse than I ever imagined."

Rogers needs a kidney transplant. For now, she undergoes dialysis three days a week, three hours each sitting.

Between doctors appointments and work with support groups, Rogers is now a national spokeswoman for lupus awareness.

"Lupus is like anything else," said Duane Peters, senior director of communications at the Lupus Foundation of America. "The earlier you know about it, the earlier you can start treatment and the better your chances."

The foundation, along with the U.S. Department of Health and Human Services and the Ad Council, is launching a widespread campaign featuring video clips, sound bytes and testimonials of eight women across the country who have lupus.

Rogers is among them, and will be featured in the two-year campaign that is expected to reach 33,000 media outlets across the country.

The campaign was spawned in part because of the experience of women such as Rogers. Most aren't diagnosed until the disease has already ravaged the body's organs, making treatment more difficult and life more painful.

More than half of the women surveyed for the campaign said they started noticing symptoms an average of four years before diagnosis, Peters said.

"We want to shorten that period," he said. "If you experience joint pain, overwhelming fatigue, skin rashes or hair loss it might be something to ask your doctor about."

The disease strikes mostly women 15 to 44 years old. Black women are about three times more likely to contract lupus, a disorder of the immune system.

Joint pain, swelling and rashes are common because the immune system is essentially attacking itself and, later, the organs it is supposed to protect.

Rogers was diagnosed at age 27. She didn't understand the full implications of lupus, however, until she and some friends took a trip to Palm Springs and hiked in 114-degree weather.

"I was so tired," she said. "I can't even explain it. It's like suddenly your body is made of lead."

Because the skin is a major organ, exposure to sun can cause lupus "flare-ups" when the disease becomes active. The incident put Rogers in the hospital for six months.

It was then she learned she also had two blood disorders, one that causes excessive bleeding, the other that causes blood clotting. Her kidneys were under siege; they weren't filtering any of the toxins out of her body.

Shortly after her diagnosis, Rogers and her husband split up and divorced. Her mother moved from Texas to take care of her, and her 19-year-old daughter pitched in, too.

She was into her first year as a teacher - a profession she fell in love with, though a slight detour from her dream of becoming an optometrist - when she resigned to focus on her health. Rogers now lives on disability, thankful she had medical coverage through her former employer.

Throughout the process, however, Rogers, a quick-witted and outspoken advocate, challenged her doctors to dig deeper and find the right treatment. At one point, after her doctor said she would need a blood transfusion, she acknowledges she "lost it."

"It was quite a scene," she said, smiling, shaking her head. "It was a genuine moment of insanity. I used to be a cheerleader, and I know I have a loud mouth."

Finally, her doctor grabbed her by the shoulders, and said firmly three times: "Don't give up."

"I don't know what happened, but finally I heard him," she said. "When I heard that, I realized that God is in control of this situation, and I'm going to make it through. I knew then that I was going to be all right."


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