Where to find hepatitis B support

Where to find hepatitis B support

Hepatitis B is a liver infection caused by the hepatitis B virus (HBV). For some, hepatitis B can be a short-term illness, but for others, it can become a chronic condition that can lead to serious health issues like cirrhosis or liver cancer. The best way to prevent hepatitis B is by getting vaccinated, which usually occurs shortly after birth.

It can feel isolating and scary to have hepatitis B. You’re not alone, though. There are a variety of hepatitis B support groups, in-person and online, that offer a safe space for you to share personal stories and experiences openly.

If a support group sounds like something you’d be interested in being a part of, here are a few places to get started.

How to find support for hepatitis B

Advocacy groups: For people living with hepatitis B, advocacy organizations offer a breadth of support, including in-person events and meetings, digital communities, forums, and educational webinars. 

The Hepatitis B Foundation is a national nonprofit organization dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide. In fact, they are the only national non-profit organization solely dedicated to the global problem of hepatitis B. The Hepatitis B Foundation is committed to “funding focused research, promoting disease awareness, supporting immunization and treatment initiatives, and serving as the primary source of information for patients and their families, the medical and scientific community, and the general public.”

On the Hepatitis B Foundation’s site, the community can find a regularly updated blog, current patient opportunities, support groups (including the Hepatitis B Information and Support List, the HBV Adoption Support List, the PKIDs Email Support List, and the Hep B Online Support Group), fact sheets, online training and podcasts, and conference videos and informational slides. Millions of people with chronic hepatitis B face discrimination that limits their dreams, education, careers, income and access to medicine. The Hepatitis B Foundation offers critical information on your rights, especially in regards to U.S. schools and education, U.S. employment, U.S. military, U.S. access to medication, and immigration and international issues. Follow the Hepatitis B Foundation’s calendar of events for in-person and virtual gatherings!

You can, of course, stay regularly updated about all things hepatitis B via their social media feeds: Facebook, Twitter, YouTube, LinkedIn, and Instagram.

Facebook: Facebook is in the business of connecting people, and their “groups” are a great way for those who have been diagnosed with or are affected by hepatitis B to meet others with similar experiences. Here are a few examples:

  • HEPATITIS B ALERT GROUP is a public group with 6,200 members whose goal is to educate the public on hepatitis B diagnosis, prevention, and treatment. Members post about dietary tips (for a healthy liver), transmission, vaccines, and more. 
  • Hepatitis B information and treatments is a private group with 5,800 members, created in Kampala, Uganda. They are noted for their quick response — group members receive answers to their questions within one hour. The members and moderators are glad to see you ask questions about hepatitis B.
  • Hepatitis B Foundation is not a group, but rather a “page,” with over 30,000 who follow it. This is the official page for the Hepatitis B Foundation where they actively post information, resources, and support for anyone affected by hepatitis B. 
  • HEPATITIS B SURVIVORS is a large, private group, consisting of over 13,000 members. The group is designed to give hope to people living with hepatitis B and to make people aware that they can live a long life with hepatitis B if it is well-managed.

There are more Facebook groups, too. You can look for Facebook groups here.

Reddit: r/hepatitis is where Reddit users who have been affected by the virus can go to connect and look for advice. This is a place for support, articles, questions, and advice. The community encourages followers to “share your hepatitis treatment experiences as well as your reviews of the various hepatitis medications and treatment options available.”

New studies are testing the safety and efficacy of investigational treatments for hepatitis B. People living with hepatitis B are needed to help move this science forward.