--Subscriber to a national breast-implant computer bulletin board
Teresa Butler recalls what she felt when a doctor identified the probable culprit of her medical woes--her silicone breast implants.
"The words that come to mind are 'disbelief,' 'confusion,' 'fear' and then 'anger,'" she says.
Within days, she rechanneled her rage into a quest for information.
The 32-year-old Phoenix mother of two went to the Phoenix Public Library and scanned the medical computer for the latest data on the subject. She devoured books and articles. She grilled her doctor about how implants could have caused her chronic fatigue, joint inflammation and other ills.
For Butler and thousands like her around the nation, self-education about their breast implants had become a painfully necessary process. Women have used the traditional routes of local support groups, seminars and word of mouth. But many others have taken advantage of the fact that the information highway is no longer a one-lane road.
A key moment in the raising of Teresa Butler's consciousness came last Christmas, after her husband, Reid, gave her the information-gathering computer service Prodigy. These days, Butler regularly signs on to a Prodigy bulletin board titled "Breast Implants" and becomes part of a new kind of community.
"You talk like you'd talk to someone in your family, sometimes even more so," Butler says of the board. "For many women, it's their only form of support. That's sad in a way, but at least they have somewhere to turn, especially as the legal battles move along."
Breast-implant litigation is at a critical juncture, with the recent news of a likely $3.7 billion settlement in a widely watched class-action lawsuit.
The controversy has also become a political battleground on which the medical establishment has sided with the manufacturers in waging war against those who say breast implants are dangerous. But the women affected seem to be growing in numbers and visibility.
More than 600 people, many of them ill, angry women, recently packed a Scottsdale resort banquet room for a breast-implant seminar titled "Education for Life." Teresa Butler attended the seminar with her husband. Not a strident person by nature, she has become radicalized as she has learned more:
"I know that if Rogaine were causing serious problems in men, it would have been treated far differently than we've been treated."
Not being taken seriously by the medical establishment, the women have found strength in each other. What that has meant is that women with breast-implant-related problems have helped their own cause more than in any other mass-product-liability case in memory. Asbestos, the Dalkon Shield and malfunctioning automobiles come to mind.
"No network has ever existed among victims like this one," says Kelly McDonald, a Phoenix attorney whose firm has more than 100 breast-implant clients. "With these women, it's not just, 'I'm outraged.' It's, 'This is what's wrong with me and this is probably why.' And it's not just emotion talking. They're talking about facts. What's been happening on the legal and medical fronts is due in considerable part to the women who are ill."
"This bulletin board kept me sane when I found out that I have silicone poisoning. . . . At that time, I didn't know, personally, a single soul with whom to share my fears or ask advice."
--From the bulletin board
Teresa Butler's cyberspace neighbors are there for her day and night, linked by modems, telephone lines and a computer bulletin board. Their reason for embracing the board is the same: information.
But, like Butler, these disembodied friends--BBers, they call themselves--aren't get-a-life computer nerds. Those on Butler's bulletin board include a professional clown named Polka Dot, a woman who buys breast implants for hospitals in the Northwest, a worried mother of three from New York City and a sympathetic husband.
"You really get to know these people," Butler says. "They say personal things that they probably haven't been able to tell their loved ones. And the information part can be incredibly helpful."
A majority of the BBers are convinced that breast implants are "perky time bombs"--as one BBer called them--that have caused their various medical problems. Some women are healthy, but wonder if they should get the implants removed before problems arise.
Others who are contemplating having their breasts surgically enlarged ask fellow BBers if saline implants really are safer than the older silicone-gel models. (You're playing Russian roulette" is a typical response.)
Information collecting is just one reason for the popularity of the computer bulletin boards. The boards are also safe places to vent and to find companionship.