In the last 10 years, the Internet has grown from a little-known network for the computer savvy to a widely used resource that everyone, from teenagers to grandmas, uses to communicate, entertain and inform. For people with kidney disease, the Internet provides resources to help understand and cope with the challenge of decreased kidney function. 

A Source of Information

The Internet is best known for the millions of Web sites that it makes available at the click of a mouse. For individuals with kidney disease, there are many Web sites from which to choose – ranging from government sites to sites maintained as a public service by groups or individuals. In addition to Web sites, the Internet provides the opportunity to connect with individuals from all over the world who have kidney disease as well as with the renal professionals who provide treatment. It is a great comfort to be able to connect with dialysis patients and professionals who can share their experiences, present information they have found helpful or just offer a sympathetic ear. There are three common ways to interact person-to-person via the Internet: chat rooms, newsgroup/bulletin boards and listservs.

Chat rooms allow you to send text messages – “chat” – in real time with people across the globe. For instance, an active chat room for people with kidney disease is www.dialyze.org/chat/. Chat rooms are a fun way to meet people but the conversation often strays far from the topic of kidney disease.

Newsgroups, also called bulletin boards, are a way to have ongoing discussions around a specific topic. There are many kidney disease discussion boards, with new ones starting all the time. Here are some popular discussion board Web sites:

• • www.he.net/~brumley/renal/

• • www.renalweb.com/cgi-local/ubb/Ultimate.cgi

• • www.dialyze.org/forums/index.php

These boards generally operate in the same manner. The initial page divides discussions into broad topics, then under topic headings there is a list of “threads.” Threads refer to a group of messages that relate to one another. Each thread is typically started as a question. Visitors and registered users of the board then have the opportunity to respond or “post.” The quality of posts fluctuate widely on these Web sites. Since people can post replies anonymously, discussions can sometimes turn into name-calling and misinformation. Some people will find these lively discussions entertaining while others prefer the more thoughtful approach of the listserv. One question you can ask on any site focused on kidney disease is what Internet resources others find helpful. The responses you receive will undoubtedly include a couple of listservs.

A Source of Support

A listserv, short for list service, is a way for a group of people to have ongoing discussions via e-mail. Typically the discussions are open to registered users and are moderated. This eliminates many of the disruptive elements found on discussion boards since posts to a listserv are limited to registered users. There are support groups outside the Yahoo® umbrella, but for simplicity’s sake let me focus on the groups provided by Yahoo®. The procedure to join any group will be similar to Yahoo’s® procedure and, while it may look complicated written out, it is not that bad.

One way to start is to go to groups.yahoo.com/ and search for a topic – dialysis, kidney disease, IgA nephropathy or my suggestion is to go straight to my favorite Internet kidney resource – a Yahoo® group called Dialysis_Support. Dialysis_Support is located at health.groups.yahoo.com/group/ dialysis_support/ or simply find the group by searching for “Dialysis_Support” through an Internet search engine, don’t forget the “_” and the search engine will find the group every time.

There are few kidney disease questions that this group cannot answer, but remember as with all information from the Internet, always consult with your doctor before making any changes. At Dialysis_Support, you are sure to find someone you can relate to – someone your age, someone who shares your circumstances. As a member, you will also gain access to the Dialysis_Support archives which are comprised of more than 35,000 messages.

Once you join, you will be part of a community of more than 600 people from all over the world – people with kidney disease, caregivers and professionals. This online community is available 24 hours a day, seven days a week. Members send e-mails to the group address and then each e-mail is sent out to each member of the list. 

When you first sign up, you will get information via e-mail from the “list owner” that provides you information to make your membership useful and enjoyable. Many people find themselves “lurking” initially; a “lurker” is one who reads the posts but does not contribute posts. This is perfectly okay, but by participating you can truly become part of the online community. Do not be intimidated. Everyone in the group was new at one time and if you make a misstep you will be offered constructive advice. To begin, just write a note introducing yourself and enjoy your new worldwide network of friends and confidants. I will see you online – billp_830 a.k.a. Bill Peckham.

Bill Peckham lives in Seattle, WA. After an unsuccessful living related transplant in 1988 he began hemodialysis through the Northwest Kidney Centers (NKC) in 1990. Today he works full-time through Carpenters Local 131 as a Tradeshow Specialist, serves on the AAKP Board of Directors, volunteers for NKC and enjoys traveling.

This article originally appeared in the July 2004 issue of aakpRENALIFE, Vol. 20, No. 1.