By Philip M

If you're reading this, you already know (or are about to discover) what a great resource the Cystinuria Support Network can be.

Now there’s a great way for you to be in touch with other members of the network every day: the cystinuria listserv.

Back in early 1987, support network member Michelle Culbertson had the bright idea of setting up an e-mail loop as a way to stay in touch. It was primitive, but effective: members sent e-mail to each other by using the “Reply All” function — so that each time a message was sent, it went to everybody who was part of the loop.

Then, in spring 1998, Keith Swenson, whose wife has cystinuria, set up an honest-to-goodness listserv. The way it works is simple: you sign onto the list (see details below); a message posted to the list goes to a computer which then immediately distributes it to everyone subscribed to the list. The list differs from the loop (though some people still call it “the loop”!) in that replying to a message simply involves replying to the list address. And you can easily sign on or sign off anytime you want.

Since so many of us who have cystinuria (or live with cystinuric family members) rarely if ever meet others with the disease, the list is a superb way to keep up-to-date, find support, and pick the brains of people who are knowledgeable about cystinuria (including four doctors who are experts at treating cystinuric patients).

Recent topics of discussion include the odds of developing cystinuria; dealing with very real pain when tests turn up nothing; the challenges faced in school by cystinuric children; the pros and cons of various types of pain medication; vegetarian recipes; and tips for passing stones and dealing with the pain they cause.

Keith, who is apparently shouldering the cost of running the list himself (thanks Keith!), has also set up an archive that anyone subscribed to the list can access. The archive includes every message ever sent to the list, and it’s a great resource. If you need to find out more about Polycitra, and you vaguely remember a discussion about it on the list, you can head over to the archives and pull up the whole thing.

To get onto the cystinuria list, send e-mail with subscribe cystinuria in the body text to: listserv@home.ease.lsoft.com. Once you've signed on, you'll get a welcome message that should answer any questions you may have about using the list — including how to sign yourself off.

To use the archives, go to: Listserv log in, and conduct your search! Please note that you must be a member of the list in order to search the archives.

With 75 members, the list has become a friendly cyber-place, packed with information and support. It provides important information, helpful messages to members who are suffering, and provides a potent reminder to keep drinking!