7 Essential Resources for Hepatitis C
While a hepatitis C diagnosis can seem scary, it’s mostly because of misinformation and preconceived notions. This isn’t a condition you can catch from kissing, for example; in fact, it’s not one that you’ll likely catch from heterosexual sex. And although the viral infection can cause serious liver damage if left untreated, it’s highly curable in just a matter of months. All this is why relying on trusted sources for the info about hep C, whether advocacy groups, foundations, or patients, is so important.
Research Is Key to Your Recovery
You can also be your own advocate by doing your homework, experts say. “The more a person understands about the condition and believes that therapy is important, the better they're going to engage with their clinician, and the more motivated they’ll be to get treated,” says Nancy Reau, M.D., professor of internal medicine in the Division of Digestive Diseases and Nutrition at Rush Medical College and Section Chief, Hepatology Associate Director of Organ Transplantation at Rush University Medical Center in Chicago.
Knowledge Is Power
Knowledge also gives you the base to ask questions and have better conversations with your doctor. “Your provider can help you understand why what you read is either relevant or not, and what else you need to think about. The more informed a patient is, the more benefit they're going to get out of their treatment course,” Dr. Reau says. From the top hospitals and national organizations to patient-run portals, these are your go-to resources.
To get versed in the basics of hep C, start with the Centers for Disease Control and Prevention (CDC), the country's national public health agency. You’ll get a comprehensive overview of the condition, answers to questions about transmission and treatment, and the latest stats. The CDC also provides recommendations for testing as well as prevention, and offers educational resources.
The nation’s largest patient advocacy group for those with liver disease, the ALF is an organization of scientists and healthcare professionals committed to education, advocacy, support, and research for the prevention, treatment, and cure of the disease. The site takes a deep dive into hep C symptoms, testing and diagnosis, risks, and prevention. It also details what to expect during treatment, and highlights patient’s stories of healing and hope.
This interactive platform enables users to engage with physicians, patient advocates, and other healthcare experts in real time to learn to ask questions about the disease and connect with peers and healthcare professionals. With Q&A forums on topics including diagnosis, symptoms, treatment, and resources, you’ll find a knowledgeable network to tap for guidance and support.
With a dedicated care team comprising hepatologists, specialists in infectious diseases, diagnostic radiologists and pathologists, as well as liver transplant experts, the Mayo Clinic in Rochester, MN, affords extensive resources for understanding hep C, including symptoms and causes, diagnosis, and treatment, as well as complications and prevention. At the forefront of research, the Mayo Clinic conducts clinical trials and publishes breaking news about the condition.
The focus of the Hepatitis C Association is to educate both patients and medical providers about the virus, offer support, and help patients living with the disease by making relevant information accessible. They offer the latest news on FDA approvals and research, and a comprehensive list of medical resources, treatment centers, support, education, and advocacy organizations, as well as liver transplant organization links.
For those interested in reading about cutting-edge research in hepatitis C—and possibly participating in it, too—CenterWatch lets you search for relevant ongoing clinical trials actively looking for participants nationwide. For more than 25 years, this globally recognized clinical trials database has offered the facts about FDA-approved drugs and their trial results.
Karen Hoyt, a hepatitis C survivor living with cirrhosis, created this blog as a way to chronicle her journey and help others with the disease along the way. She details everything from navigating COVID-19 with a liver transplant to exercising with cirrhosis to nourishing recipes—all in a way that’s approachable, and feels like learning from a brave and compassionate friend.