Finding solace in cyberspace
Stricken with the loneliest of illnesses, people with rare
forms of cancer have built their own online communities

published June 4, 2001
written by Charles Savage / Miami
illustrated by Melissa Scram / New York

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'No man is an island,' the poet John Donne assures us. But on October 5, 1998, I had a hard time sharing his optimism. That was the day I found out I had LMS--leiomyosarcoma, a rare cancer of soft muscle tissue that strikes fewer than four people out of a million.

But despite those numbers, I never really felt alone. Today, people with extremely rare medical conditions around the world are banding together via e-mail groups. It is, in every sense, a revolution in terms of patient empowerment, one that has quickly spread in the past couple of years.

Cancers like LMS are among the loneliest of illnesses. While those with more common cancers can usually find a network of others in the same city who have the same condition and who are going through the same thing, my chances of ever meeting another LMS patient seemed slim.

Only a few years ago, that isolation would have been my new reality. It certainly was for Orland Hetherington, a native of Ontario, Canada, who had LMS diagnosed in 1994. "I spent two years trying desperately to find another living soul with LMS," Hetherington said. "I was alone with this and scared. I became somewhat obsessed with finding someone else on the planet with LMS and searching harder for more and more information."

In March 1997, LaDonna Backmeyer, an LMS patient in Rock Island, Illinois, found Hetherington on a cancer online support list. She asked him to help her start an online discussion group specifically for LMS patients and their families and friends. From just four members then, that e-mail group has grown to more than 560 subscribers.

For a while, I was one of them. The group instantly welcomed me to its ranks with both personal notes of understanding and a barrage of advice on treatment options and research information that helped me know more about what lay ahead during my recovery.

The group "has given information to several hundred patients since its founding," Backmeyer said. "Some of the patients check in for a small amount of time in order to get the information they need; others find a group of welcoming friends, and they stay."

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