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Diabetes on the Internet

By David Mendosa

Last Update: January 13, 2001

With all the resources for diabetes available on the Internet now, how do you decide where to start? In just a few years we've gone from a scarcity of hard-to-find sites to a superabundance.

A couple of years ago the big complaint with the Internet was how hard it was to find anything on-line. Now with fast and efficient search engines you can find just about anything you are looking for—if you have the patience to scan through long lists of sites.

The Internet has no real competition.

Consider the number of references to diabetes on the Internet. When I started keeping track of "On-line Resources for Diabetics" in February 1995 at my Web site, the Internet had two mailing lists, two newsgroups, and two other Web sites dealing with diabetes (plus two each reachable by ftp and gopher).

Now, as I write this article some two years later, my "On-line Resources for Diabetes" site describes 13 mailing lists, three newsgroups, and 224 Web sites. If you click on my site today—at http://www.mendosa.com/faq.htm—you will find even more resources for people with diabetes, which you can reach with another click.

And that's just the important sites dealing with diabetes. If you ask search engines like AltaVista or Excite to list the sites that mention the word "diabetes" they will present you with links to more than 60,000 of them.

Don't let the numbers overwhelm you. If you are looking for information on diabetes, you need to frame your question carefully for your specific interests. Remember too that while tons of information about diabetes is available on-line, you will often find that your doctor, books, and magazines can present it in more organized form.

But if it is primarily support and a sense of community that you're after, the Internet has no real competition from local support groups or anything else. For one thing, members of local groups are seldom as aggressive in dealing with their disease as those you find on-line.

The place to look for support on the Internet is in its mailing lists. A mailing list is just a computer program that sends the same e-mail message to an entire list of people who have subscribed to the service. Sometimes called "listservs" after the major software program that automates the sending of the messages, mailing lists are the high-tech equivalent of the old-fashioned party line, where everyone can listen in on everyone else's concerns.

Don't let the word "subscribe" throw you. You subscribe to a mailing list by simply sending it an e-mail message. There's no charge beyond what you already pay for your Internet account.

Among the 13 mailing lists dealing with diabetes, you will probably find the most support from one simply called Diabetic. It is the oldest, largest, and most active of all the on-line groups concerned with diabetes.

To subscribe to the Diabetic mailing list, send an e-mail message to listserv@lehigh.edu. Leave the subject line blank, if your software lets you. In the message body write these words: subscribe diabetic Your Name

Remember to change "Your Name" to your real name. Not everybody does, which gets it a little confusing.

You should get back a confirming message with more information about the list. Save this message. One of the options will show you how to receive the postings in a daily digest format. The term "digest" might also be misleading. All it means is that individual messages are lumped together in a long one. Nothing is actually digested out except for the routing headers that you seldom want to see anyway. I strongly recommend that you switch to the digest option as soon as you can. Otherwise, the Diabetic list may be overwhelming to you.

The list has grown to about 1,000 members who at last count were sending each other about 125 messages daily. An in-box full of 125 messages about diabetes every day can be daunting, while one or two digests just don't seem to clamor for your attention so much. You don't have to read them all, and when I'm busy I just skim the subject lines for what interests me.

To quit receiving messages, all you need to do is send another e-mail message to the same server. Just write "unsubscribe diabetic" in the message.

Russ Hathhorn at Portland Community College in Portland, Oregon, created the Diabetic mailing list in November 1990 for his wife, who has diabetes. Members of the list posted a total of 15 messages that year.

In August 1994 when the college could no longer support the list, its management went to Lehigh University in Bethlehem, Pennsylvania. The "list owner" is Steve Roseman, a senior systems and network analyst at the university.

"List owner means helping people who are having problems subscribing or posting and monitoring the list to ensure it keeps working," says Mr. Roseman. With a son who has diabetes, he has been posting messages to the list since 1991, longer than anyone else now participating there.

The list is unmoderated, which means that neither Mr. Roseman nor anyone else polices what its members write. Like all unmoderated mailing lists, this means that flame wars—personal attacks—sometimes erupt.

While Diabetic is noted for its great sense of community and high degree of civility, last summer a growing number of flames and chatty off-topic messages prompted some core members to split off and start another mailing list that is somewhat moderated and has less than half the message volume of Diabetic. In the meantime message traffic on Diabetic slowed down temporarily, but has since rebounded to its highest level yet and has returned to its usual civility.

When I asked members of the Diabetic mailing list how they benefited from it, I received a large number of replies. The responses, however, fall into four areas:

  1. Chat and Humor
    While off the point and sometimes irritating, it does help to lighten the load. "This is the social chatter that adds character to the discussion," writes E. Loren Buhle Jr. from Philadelphia.

  2. News and Information
    News and information "New ideas quite often appear on Diabetic before becoming widespread," writes Connie Bronnenberg. "Sharing ideas has opened my eyes to improved methods of treatment."

    Richard Thornton in Pasadena, Texas, agrees. "As a direct result of information that I have gotten from others on the list I am on different medications (doc approve), my control is better (not perfect, just better), and I am able to understand what it is to be a diabetic because I see the definition expressed in hundreds of different views."

  3. Sense of Community
    It's great to keep in touch with some of the same people for many years. Unlike mailing lists dealing with hobbies and other transient interests, since diabetes is a lifetime concern, people tend to stick around.

    "It's reassuring to know that there's a place where I can go with my questions, observations, and vents, where others won't judge me," writes Buzz Haughton from Davis, California. "I especially like the international nature of this list. By reading it I can find out how others who aren't Americans approach the treatment of this affliction we share in common."

    For Rachel Maschler in Israel the satisfaction she gets from the list comes from support that she is able to give as much as support she receives. "To be able to encourage another member—offering information and moral support—is something I shall always cherish," she writes.

  4. Support and Sympathy
    "The anonymous nature of the system allows persons to talk about personal problems that they may not even discuss with their doctors or relatives," writes Dr. Arturo Rolla, a Boston endocrinologist who has played an active role on Diabetic and other mailing lists.

Maybe Natalie Sera in Reno, Nevada, sums it up best for all of us on the list. "I learned that it's OK to be my own advocate in diabetes care," she wrote the group. "When I first started having my own ideas about my treatment, I felt guilty about it—like I was doing something wrong. But I received so much encouragement here that I got more forthright about it, and I've only seen improvement in my control. I was afraid my doc would be negative about my taking things into my own hands, but he's supported me in everything I've done. I'm feeling much more optimistic about my future—at one point I didn't think I'd live to see 50, and now I'm planning on 90!" 


This article appeared originally in Two Types Magazine, July 1997, pp. 56-60, which is no longer published.


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