If you need a lifeline, why not go online?

The Internet is full of support groups for people suffering from a variety of diseases, writes Leon Heller

Anyone scoffing at the Internet should talk to one group for whom it has become a lifeline. Among the 11,000 Usenet newsgroups, or forums, are 50 aimed specifically at providing a self-help facility to people suffering from a variety of afflictions. These range from cancer and heart disease to rarer complaints such as Tourette's syndrome and muscular dystrophy. Look through the alt.support list to see if there is a group for a particular complaint. You could even start your own if you cannot find anything suitable.

As a sufferer from Crohn's disease - an incurable inflammatory bowel condition - for many years, I joined the alt.support.crohns-colitis (a.s.c-c) group as soon as I saw its existence in a book on the Internet.

In common with nearly all the other alt.support newsgroups, a.s.c-c is not moderated (postings to moderated groups have to be sent to an individual who vets them before they are sent out) and subscribers are able to discuss virtually every aspect of their disease and its treatment. Membership of these groups is free: all you need is access to the Internet. Most subscribers are in the US, because that is where the greatest concentration of Internet users is.

Most groups will have a regular posting of frequently asked questions (FAQs). It is a good idea to get hold of this as soon as you can. Many FAQs for groups are held on rtfm.mit.edu and can be downloaded using File Transfer Protocol.

Treatment of IBD is by a variety of powerful drugs, including steroids and immuno-suppressants, which can have very unpleasant side-effects, and surgery, which generally involves resection of diseased bowel. Most of the postings are about medications and their side-effects, and dealing with problems arising from surgery.

Some people find alternative medicine helpful, and there have been many discussions on the efficacy or otherwise of acupuncture and various herbal concoctions. Perhaps the most useful aspect of the group for me is that it is a good way to find out about the latest treatments and research into the causes of the disease, without having to scan the medical journals. It has been suggested that measles vaccination is a possible causative factor for Crohn's disease. This information was rapidly circulated to all subscribers, as was the discovery that a bacterium that infects a small proportion of cattle has been found to have infected Crohn's sufferers.

If you do not have full Internet access but receive e-mail, you can join a mailing list, such as IBDlist. To join this, you send an e-mail request to ibdlist-request@menno.com. You then receive a weekly e-mail message containing all the messages that have been sent in. Requests for information, or replies to previous messages, are sent to ibdlist@menno.com, or you can communicate directly with the sender of the message that interests you. Topics discussed are similar to those dealt with via the a.s.c-c group.