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A dark room can be a frightening place. Having a chronic disease is like sitting in a dark room, wondering what’s around you. But learning as much as you can will flip on the lights; you’ll see what’s there and it won’t be nearly so scary.
Not too long ago, you would have been hard-pressed to find much information about Hep C. That is no longer true. Have Internet? You can become an expert in the causes, treatments, and progress toward a cure. Hepatitis Foundation International has a good one, with research articles, a physicians referral list, news about upcoming conferences, a locator for both American and Canadian support groups, a newsletter and a very nice kids’ page.
Priority Healthcare has the Hepatitis Neighborhood. It has a Cafe, with chat rooms and message boards, the Pharmacy where reimbursement experts will help you file your Hepatitis-related insurance claims, and a Library with recommended reading, articles, and audio clips. For the professional, there’s the College for an in-depth, scientific look at Hepatitis. They even have a Theater with downloadable film clips.
The Center For Disease Control (CDC) has a Web-based training course of healthcare professionals and Public Service Announcements from Dr. David Satcher, the Surgeon General. The National Institute of Health (NIH) offers very scientific, heavily documented thesis on Hepatitis and related diseases.
You can also contact the American Liver Foundation, 1425 Pomptom Ave., Cedar Grove, NJ 07009 at 1-800-GO LIVER (1-800-465-4837), the Hepatitis C Foundation,1502 Russett Drive, Warminster, PA 18974, 215) 672-2606, or the National Digestive Diseases Information Clearinghouse, Information Way, Bethesda, MD 20892-3570, 301-654-3810.
For related information about the Americans with Disabilities Act, dial 1-800-949-4232 or log on to. Ask for the information which would pertain to people with HIV.
Are you a veteran? Try “Veterans helping Veterans” at.
All of these websites have plenty of links; be sure to check out as many as you can.
And here’s some more ideas. LOLA is the Latino Organization for Liver Awareness (718-892-8697).
The Hep C Connection produces a very interesting newsletter, full of news and letters from other Hepatitis C patients. they can be reached at 303-860-0800 or write to The Hep C Connection, 1177 Grant St, Suite 200, Denver, CO 80203. They also handle distribution of a great book, “Living with Hepatitis C, A Survivor’s Guide, by Dr. Gregory Everson and Hedy Weinburg.
“The Hepatitis Handbook”, by Matthew Dolan, can be ordered for $25 plus handling by calling 800-337-2665, and Beth Petro Roybal’s book, A Personal Guide to Good Health, focusing on living with the disease, can be obtained through Ulysses Press at 800-377-2542 for $8 if you mention the Hep C connection.
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