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Internet Steered Her Toward Proper Care

October 23, 2000

Claire Panosian Dunavan's opinion on Web surfing and self-diagnosis ("Web Surfing May Fuel Exotic Self-Diagnoses," Sept. 25) came as no surprise to me. When my physician friends hear that I run several Internet discussion groups for survivors of childhood and adolescent cancer, they cluck disapprovingly and tell me that I am not acting as a responsible health-care provider. But I like to remind them that without the Internet, I might be dead.

My problems started five years ago when I developed chronic wheezing and shortness of breath. I saw one doctor after another, each with a different diagnosis. Each doctor had a treatment, and each treatment failed. Finally, I was admitted to the hospital. The sac surrounding my heart was filled with fluid and the fluid had to be drained. I expected to get better. I didn't.

That's when I logged on to the Internet and went looking for the cause of my illness. Within days, I met someone who had the same heart ailment, and discovered that she too was a long-term survivor of Hodgkin's disease. I followed in her footsteps and was correctly diagnosed.

When I got back home, I started an Internet discussion group for long-term survivors of childhood/adolescent cancer. We have more than 200 members and almost every day I hear from someone with a story like mine. Too often our primary care doctors know little or nothing about the late effects of radiation. Our discussion list does a better job of identifying health problems related to previous treatment than most primary care doctors. We serve a vital function for a group of people who often have very exotic illnesses. Without the Internet, I and other long-term survivors might be dead.

LINDA GOETTINA

Los Angeles

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