This can place a lot of emotional stress on people living with hepatitis C, who often have to wait for treatment to be approved. Even when an insurance company gives the go-ahead for a specific treatment, there may be side effects and ongoing tests to confirm whether the virus has been cleared.
During these times, support groups can be a lifeline to people faced with the uncertainty of hepatitis C. They also provide an outlet for those who feel stigmatized by the disease, offering them the means to share experiences with others who fully understand what they are going through.
In 2013, the ALF (in conjunction with app developer Insight) created one of the most comprehensive online communities for people living with liver diseases. Not only does the free, members-only community board address hepatitis C specifically, but it also has forums dedicated to liver cancer, liver transplants, nutrition and diet, and the needs of the caregiver.
What the ALF website lacks in terms of easy navigation, it more than makes up with a higher standard of hepatitis C information interaction. The community board has strict privacy features and offers 24/7 facilitation to avoid abuses and the dissemination of misinformation.
The strength of the hepatitis C discussion forum lies in its simplicity. You can easily locate topics of interest, review and add comments, or even start a new subject string once your membership has been approved by the forum administrator. The site is completely free and unencumbered by advertising.
The forum may not provide you with the cutting-edge information you’d find on other online resources, but the one-on-one interactions are almost invariably robust, supportive, and uplifting. It’s a great place to check in if you ever need an emotional boost.
To date, there are over 500 support groups offered by DailyStrength, including ones devoted to hepatitis C, cirrhosis, liver cancer, and liver support and health. Popular discussion strings include hepatitis C/HIV co-infection, liver transplants, and hepatitis C and pregnancy.
In addition to posting and replying to comments, DailyStrength offers instant messaging and a unique journaling feature that allows you to share your story (via photos and text) with others in your group. You can even send instant “hugs” to others in need.
Despite an attractive interface and intuitive navigation, DailyStrength suffers from a lack of moderation and the occasional infiltration of medical misinformation. (A forum on Morgellon’s disease is one such example.)
DailyStrength is not only free and convenient, but it provides a gamut of multimedia tools to take your interactions to the next level.
Being waitlisted for a liver transplant can be extremely stressful, given that the average wait time is around 11 months if you qualify. It is important, therefore, that people facing a transplant be given quality information and support to help them through difficult times.
Mayo Clinic Connect allows waitlisted people and their loved ones to seek advice, referrals, and information about liver transplants (and other types of organ transplants). The discussion boards are extremely active, often with multiple postings per day. Registration is required, but access to the discussion boards and messaging features are free.
There is nothing especially fancy or innovative about Mayo Clinic Connect, but the site excels in delivering expert 24/7 moderation, member confidentiality, and knowledgeable insight from others who have undergone or are preparing to undergo a liver transplant.
Liver transplants are today the second most common organ transplant in the United States, following kidney transplants.
If your gastroenterologist or hepatologist is unable to link you with a local support group, you can try the online locator offered by Hepatitis Central. This free tool allows you to search for support groups within a five- to 20-mile radius of your zip code. If there are none, you can click your state listings to see if any nearby towns and cities offer scheduled support meetings.
Many of the listings are from major medical centers, community health centers, or nonprofit organizations like ALF or the Hepatitis Foundation International. All 50 states are represented alongside the District of Columbia, Puerto Rico, and the U.S. Virgin Islands. Most of the groups are free.
Hepatitis C support groups are not meant to replace a psychiatrist or therapist if you are experiencing severe depression or anxiety. If you have symptoms of anxiety or depression, ask your doctor for a referral to a mental health professional.
With over 32,000 followers and a popular community discussion board, HepatitisC.net is open to registered users who can post content, reply to comments, and take full advantage of other features on the main website.
In addition to instant messaging and privacy settings, there are a plethora of forums covering everything from hepatitis C symptoms and health insurance to the latest in research.
Designed as a free service by Health Union, the developer of online health portals, HepatitisC.net offers confidentiality, strict rules of participation, and the active moderation of user comments and content.
CaringBridge allows you to build a dedicated website where friends, family, and care providers can link up. Rather than having to contact individual members of your support team, you can post photos, journal entries, lab test results, and other information to keep everyone in the loop.
Updates can also be tailored so that certain individuals receive them and others don’t. A basic page only takes five minutes to set up with a simple, one-click image posting and other personalization features. You can even raise funds for yourself or a beloved hepatitis C charity by linking your CaringBridge website, sharing a message, and tapping into your network.
The CaringBridge app is available for free on the App Store and Google Play.
Dynamics like these make hepatitis C support groups all the more important to those awaiting treatment or struggling to remain sober in the face of reinfection.
