West Nile Virus Survivors Foundation at www.westnilesuvivor.com

Posted on Sun, May. 29, 2005
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Some West Nile survivors turn to advocacy to spread the wordALICIA CHANGAssociated Press
LOS ANGELES - Soon after Jack Raney recovered from a West Nile infection that left him comatose for several days, he began his campaign against a disease that stole everything from his job to games of catch with his three kids.
He has lobbied Gov. Arnold Schwarzenegger for more West Nile funding and helped public health officials promote a speedy new way to test infected birds, which can transmit the virus to mosquitoes that infect people.
As summer ushers in another West Nile season, Raney has joined a small but growing rank of victims who are dedicating themselves to grassroots projects that put a public face on the disease and pressure health officials to do more to prevent its spread.
Disease advocacy isn't a new phenomenon - when AIDS swept the nation in the 1980s, survivors doubled as activists, forming support groups to counsel victims and raise research money. By comparison, West Nile advocacy remains a scattered effort of individuals, partly because it's relatively new and hasn't killed victims in epidemic numbers.
"I'm all for talking about it because it's a lonely disease," said Raney, 47, an Upland resident who had to quit his job as a bricklayer after suffering from depression and memory loss.
West Nile has marched steadily westward since first attacking New York in 1999, killing 684 people and infecting more than 16,000. California bore the brunt last year with more than 800 infections and 28 deaths.
While it's difficult to predict how severe this season might be, some public health officials fear that an unusually wet winter in parts of the West could cause a bloom of mosquitoes, potentially fueling another outbreak. Most West Nile infections are mild, but severe cases can cause paralysis and swelling of the brain.
Mitch Coffman, of Lafayette, La., was a black belt in tae kwon do and motorcycle enthusiast when he contracted West Nile in 2002. He can't do either anymore, but has started a nonprofit called the West Nile Virus Survivors Foundation, creating a Web site with information about the illness, the latest newspaper clippings and stories about other survivors.
Coffman, 40, was a month shy of finishing graduate school when he fell ill. During his recovery, he was struck that not all survivors receive the kind of family support he did.
"I don't want to be anybody's hero," he said. "I just want to let people know that there's a way to survive West Nile."
Shelley Bailey, a 39-year-old single mother from Boulder, Colo., decided to lend her face last year to a county public awareness campaign urging people to take simple preventive steps, such as wearing insect repellent, long sleeves and pants. Four other survivors in Colorado, where the disease killed 61 people in 2003, also took part.
Bailey, who became infected in 2003, took six months off from her job to recover while her mother helped care for her two young children. She continues to battle blurry vision, migraine headaches and muscle weakness.
"I can't imagine somebody going through what I went through," Bailey said. "That's why, whatever I can do to bring awareness, I'll do it."
Raney, the man from east of Los Angeles who contracted West Nile last summer, does not consider himself politically active, but he went to Sacramento in March to ask for $300 million in West Nile funding. Schwarzenegger has proposed spending $12 million in the coming fiscal year for mosquito control projects; local agencies already spend about $90 million annually to combat the disease.
In April, Raney appeared with health officials from a mosquito control agency to promote an instant test for analyzing infected birds. Raney also agreed to let a Taiwanese television crew follow his daily routine in a documentary that will be aired in June. In the film, Raney chronicles the trials of coping with the aftermath of West Nile.
Recently, Raney decided help the hospital that treated him, telling doctors that he would like to counsel West Nile patients and their families through their ordeal. The hospital has not seen any West Nile cases yet this year, but a spokeswoman said it will take up Raney up on his offer for interested patients.
"I'm willing do whatever I have to do, go wherever I have to go, to get the message out," Raney said.
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Associated Press researcher Julie Reed contributed to this report.
ON THE NET
CDC West Nile page: http://www.cdc.gov/ncidod/dvbid/westnile
West Nile Virus Survivors Foundation: http://www.westnilesurvivor.com
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