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West Nile survivors join study to unlock mystery

“My Granma survived West Nile!” read family reunion T-shirts, also sporting a picture of 93-year-old Helen Uher.

The fact is worth celebrating for the Uher family.

While the majority of people who become infected with the West Nile Virus do not show any symptoms, some do become severely ill. “My mother nearly died,” said Anita Evers, Uher’s daughter.

Now, Uher is joining in a search for answers about West Nile Virus at The Nebraska Medical Center. So far, about 300 Nebraskans have stepped forward to volunteer for the study. The enrollment goal is about 850.

Doctors are trying to determine why some people become severely ill with the mosquito-borne virus while others don’t even know they’ve been infected. The Nebraska Medical Center is one of several sites for the study that’s being conducted in the United States and Canada.

“Most illnesses related to West Nile Virus aren’t reported because people experience flu-like symptoms,” said Mark Rupp, M.D., infectious disease specialist at The Nebraska Medical Center. “But some persons develop a serious neuro-invasive disease that can involve the brain or spinal cord resulting in paralysis or permanent neurologic impairment. We don’t understand why – this study is designed to find that crucial piece of information.”

Early one morning in September 2003, Uher of Dodge, Neb., awoke to discover her bed was very damp.

“I couldn’t figure out why,” Uher said. “Shortly thereafter, I passed out.” With a temperature of 105 degrees, she was rushed to the hospital.

“Doctors at first thought I’d had a stroke, but there were no signs of that. Then they thought I had pneumonia, but confirmed that wasn’t the case,” Uher said. “They knew I had some kind of infection because of my high temperature, but it really was a mystery as to what had made me so sick.”

In fact, it wasn’t until after spending more than two months in the hospital and a nursing home that a test result confirmed she had contracted West Nile.

Uher loves to garden and predicts she must have been bitten by a mosquito while working outdoors, “I never knew I even got stung,” she said.
That one mosquito bite made her incredibly ill, though.

“Mom was very weak. She could hardly roll over and she lost the ability to walk,” Evers said. “And this was a woman who just the week before had been canning 50 quarts of tomatoes, pickles, beets and peppers.”

The year 2003 had the greatest number of reported West Nile illnesses. More than 9,800 cases were reported in 45 states and there were 264 deaths. Almost 2,000 of those cases occurred in Nebraska.

So far for 2006, the Nebraska Health and Human Services System reports 28 human cases in the state.

“For unknown reasons, Nebraska has been at the center of the West Nile virus epidemic in the U.S. On a per capita basis, we are near the top of the list of involved states,” Dr. Rupp said.

“In 2003, people had just begun to talk about the virus at that time, so I was shocked to find out that’s what was wrong with me,” Uher said. “At the same time it was good to have an answer.”

It took her several months to regain her strength. She had to learn to walk again, first with a walker and then with a cane.

“I still use a cane when I leave my house,” Uher said. “But I can get around pretty well.”

The majority of people with the West Nile virus will show no symptoms. One in five people will develop a fever, head and body aches or skin rashes. Only one in 150 show severe symptoms such as convulsions, coma or paralysis.

Another participant of the study, Clement McGill of Wahoo, Neb., hopes the clinical trial is successful. Three years after contracting the virus in August of 2003, it’s still taking a toll on his body. McGill says he still experiences partial paralysis in his left leg, gets severe headaches and is often fatigued.

“I want to know why some like me get severely ill with the virus and others don’t get sick at all,” he said.

Adults diagnosed with West Nile virus anytime within the past four years may be eligible to join the research effort. Participation involves testing of blood and saliva, a brief medical interview and a release of the individual’s previous West Nile Virus testing results. The blood and saliva samples can be collected through a home medical visit for those participants who live outside the Omaha-metro area.

For enrollment information, call The Nebraska Medical Center Clinical Trials Office at 402-552-2254 or toll free 1-800-763-6858.