What are hepatitis C support groups?

Hepatitis C support groups provide a safe environment for people with the condition to come together and share their personal insights, experiences, and concerns. Hepatitis C infections continue to rise in the United States as a result of the ongoing opioid crisis , more than tripling in numbers from 2010 to 2016. 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.

Is an online hepatitis C support group right for me?

In addition to offering encouragement, hepatitis C support groups provide a safe haven for those unable or unwilling to share their status with others. By accessing a community of others who understand what you are going through, you can avoid the stigmatization and fear that drive many to isolation, depression, and substance abuse. Others with hepatitis C may need more functional support, particularly those who may already have advanced cirrhosis or liver cancer. For them, a hepatitis C support group may be more than an emotional lifeline: it can be a conduit to invaluable information and referrals.

How are hepatitis C support groups structured?

In-person support groups are typically overseen by a facilitator who ensures that the meetings are structured with specific goals and rules of interaction. Some may be more informal than others, but the sessions are invariably goal-oriented so that members can learn to normalize hepatitis C in their lives. Because not every community has in-person support groups, many people will turn to online groups to fill the void. Others will embrace them for the anonymity they provide. The best online support groups replicate the same features of a traditional support group, ensuring a safe, nonjudgmental environment with strict privacy rules.

How much do hepatitis C support groups cost?

Because most in-person support groups are community-based, there is not usually a fee associated with joining. Many are run by nonprofit organizations or medical centers, while others are components of larger HIV support services or substance abuse treatment centers. Most online support groups are free, although some may require a small subscription fee (usually to unlock features like instant messaging or unlimited postings). But these sites are more the exception than the rule. In the end, the bells-and-whistles of an online support group don’t so much matter as the level, speed, and quality of the interactions. Online hepatitis C support groups should not be confused with online hepatitis C counseling, many of which are paid services offered by licensed therapists or social workers.

7 Hepatitis C Support Groups of 2021

Hepatitis C is an infectious viral disease of the liver that affects around 1% of the U.S. population, or roughly 2.4 million people. Because it often appears without symptoms in the early stages and is almost entirely “silent” during its chronic stage, many people don’t even realize they’ve been infected until the disease is advanced. Even though there are newer treatments available to treat hepatitis C, these drugs are extremely costly and not always immediately approved by insurers until your fibrosis score (a measure of liver injury) is more advanced.

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.

American Liver Foundation

Founded in 1976, the American Liver Foundation (ALF) remains the country’s leading nonprofit organization dedicated to the diagnosis, treatment, and prevention of hepatitis C.

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.

Hep C Discussion Forum

The Hep C Discussion Forum is a straightforward and useful resource for anyone living with hepatitis C. Sporting a layout as basic as Craigslist, the free site has nevertheless attracted over 4,000 registered users who have made more than 120,000 postings covering in excess of nearly 10,000 topics.

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.

DailyStrength

DailyStrength is a free online support tool created by the founders of the digital health platform Sharecare. DailyStrength is designed to link people with health or emotional concerns for one-on-one or group interactions.

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.

Mayo Clinic Connect

Hepatitis C is the leading cause of liver transplants in the United States. Despite the introduction of newer, more effective treatments, liver transplants remain a reality for thousands of people with advanced infection who have either developed liver failure or liver cancer.

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.

Hepatitis Central

There are times when you need more than online support if you have hepatitis C. This is especially true if you are experiencing anxiety or depression, which are fueled by isolation and loneliness. Live, in-person support groups can provide the human contact needed to overcome many of these negative emotions.

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.

HepatitisC.net

Of the numerous Facebook communities created for people with hepatitis C, the one that is arguably the most active is HepatitisC.net.

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

Friends and loved ones often make the best support system for those living with hepatitis C. The American Liver Foundation understood this when it endorsed CaringBridge, the free website-building tool for people with health concerns.

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.

Frequently Asked Questions

What are hepatitis C support groups?

Hepatitis C support groups provide a safe environment for people with the condition to come together and share their personal insights, experiences, and concerns. Hepatitis C infections continue to rise in the United States as a result of the ongoing opioid crisis, more than tripling in numbers from 2010 to 2016.
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.
Is an online hepatitis C support group right for me?

In addition to offering encouragement, hepatitis C support groups provide a safe haven for those unable or unwilling to share their status with others. By accessing a community of others who understand what you are going through, you can avoid the stigmatization and fear that drive many to isolation, depression, and substance abuse. Others with hepatitis C may need more functional support, particularly those who may already have advanced cirrhosis or liver cancer. For them, a hepatitis C support group may be more than an emotional lifeline: it can be a conduit to invaluable information and referrals.
How are hepatitis C support groups structured?

In-person support groups are typically overseen by a facilitator who ensures that the meetings are structured with specific goals and rules of interaction. Some may be more informal than others, but the sessions are invariably goal-oriented so that members can learn to normalize hepatitis C in their lives. Because not every community has in-person support groups, many people will turn to online groups to fill the void. Others will embrace them for the anonymity they provide. The best online support groups replicate the same features of a traditional support group, ensuring a safe, nonjudgmental environment with strict privacy rules.
How much do hepatitis C support groups cost?

Because most in-person support groups are community-based, there is not usually a fee associated with joining. Many are run by nonprofit organizations or medical centers, while others are components of larger HIV support services or substance abuse treatment centers. Most online support groups are free, although some may require a small subscription fee (usually to unlock features like instant messaging or unlimited postings). But these sites are more the exception than the rule. In the end, the bells-and-whistles of an online support group don’t so much matter as the level, speed, and quality of the interactions. Online hepatitis C support groups should not be confused with online hepatitis C counseling, many of which are paid services offered by licensed therapists or social workers.

5 Sources

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