The Insulin Pumpers mailing list that took shape this year is certainly highly specialized. But for those people with diabetes who are looking for the tightest possible control, if offers knowledgeable advice from pumpers and their parents.
That candy meant more to him than anyone could imagine.
For Rose Lulla, the mailing list encouraged her to find an endocrinologist who would put her 10-year-old son Ravi on a pump. "Doctors here in Omaha, Nebraska, don't have much interest in putting kids younger than 12 or 13 on the pump," she tells me.
Ravi had got his diagnosis on his seventh birthday. In October his mother and he joined the Insulin Pumpers mailing list, and about two weeks later he began to use a pump.
Ravi's use of the pump not only give him tight control but also have unexpected emotional rewards. Days after he began to use a pump, one of his classmates noticed that he was eating the five M&Ms that the teacher occasionally hands out as a treat, Ms. Lulla says.
Thinking that Ravi had diabetes and couldn't eat candy, the classmate was stunned, until Ravi explained how the pump allowed him to cover the additional carbohydrate. "I think those five pieces of candy meant more to him than anyone could imagine," Ms. Lulla says.
"Ravi's classmates are thrilled for him," she continues. "They are so excited that after three years he could finally eat lunch with the class in the lunchroom as opposed to earlier in the classroom. " Before starting on the pump, Ravi's meal schedule had to be fit around his multiple injections—not around the usual school day.
In Palo Alto, California, Michael Robinton understands how Ravi and Ms. Lulla feel. Mr. Robinton runs the mailing list because his 14-year-old daughter Lily has been pumping for the past three years. She currently maintains a hemoglobin A1c of about 6.75, he says.
"I was touched by Ravi's story," Mr. Robinton says. "It reminds me of Lily's request for McDonald's apple pie on the way home from the endo's office, when she got her pump filled with insulin for the first time," he says.
Although pump users still need to follow a meal plan, they can better accommodate snacks that would be hard to fit in with conventional insulin therapy.
Mr. Robinton, whose business already had an Internet address, took over management of the list a few months ago when it needed a home. Glenn Yoder in Foster City, California, originated the list, "but my computer skills ran out," he says.
Mr. Yoder, 65, has been on insulin for 37 years, including three years on a pump. "My hemoglobin A1c is in the high 6s and low 7s," he says with satisfaction. "Before the pump it was running at 12."
The list started as a group of America Online members. Mr. Yoder searched AOL's member profiles for "insulin pumpers" and wrote them. "Almost everybody was interested in it, and it took off and spread by word of mouth."
Until recently Insulin Pumpers was a closed list with about 20 members. But after moving to the Internet and finding a home on Mr. Robinton's site, it has grown to a membership today of about 100.
The easiest way to join the Insulin Pumpers list is through its Web page at http://www.bizsystems.com/Diabetes/ and click on "Join Insulin-Pumper's and other mail lists" and then click on "Join."
One requirement of this mailing list that many others don't have is to send the list a personal profile. The profiles are available on-line in a "members only" area of the Web site. Also available on-line in this closed area are archived message going back to May. Mr. Robinton is also building the site's collection of answers to frequently asked questions.
The American Diabetes Association originally published this article on its Web site as one of my “About the Internet” columns.
The Insulin Pumpers web site and mail lists are the
largest support forums in the world for the users of insulin pumps.
There are more than 4,700 members, including many doctors, CDE's, RN's, and
more than 800 kids (or their parents) who started pumping at ages 10 days through their teens. If a challenge has come up, one of these many contributors
has surely faced it or something similar and can tell how they solve
Executive Director Michael Robinton tells me, "We're still focused on the same issues and problems that existed when the organization began. There are a few more people and, hopefully, a few more answers."
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