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About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

Hep B Community – A New Global Online Support Group

The Hepatitis B Foundation is excited to announce our support of a new global online community support group called Hep B Community. Thomas Tu, PhD, a researcher at Westmead Institute for Medical Research founded this online community to reach a global audience who might need support if they are affected by hepatitis B. 

Dr Tu stated that “While hepatitis B remains incurable, it can be managed and treated. But, people with hepatitis B face social stigma and discrimination, discouraging them from seeking medical help that could prevent progression of their illness to serious disease like liver cancer,”. He further explained that this online forum is important for people affected by hepatitis B to feel supported and empowered to take control of their diagnosis. 

Westmead Hospital’s Storr Liver Centre and the Hepatitis B Foundation have provided start-up funding and help coordinate the forum with support from the World Hepatitis Alliance. The site is peer-led, volunteer-run and is free to join. Already, more than 200 members from all over the world have joined.

Chari Cohen, DrPH, MPH, senior vice president, Hepatitis B Foundation, believes, “The new forum is critically important because people can anonymously seek advice about how to live with hepatitis B, and what they can do to protect their liver and long-term health.” If you are considering joining Hep B Community – do not hesitate! In fact, research has shown that people participating in hepatitis support groups can increase their knowledge, coping, and compliance.1 

How Does it Work?

The online forum has multiple sections like learning resources, media about hepatitis B, and general discussion. 

You can post completely anonymously and a hepatitis B expert or a person living with hepatitis B will respond to your questions. You can also choose your own username and the platform will never show your email, ensuring privacy and confidentiality. 

The hepatitis B experts responding to your questions go through a verification process to identify that they are trustworthy sources of information. These providers are clinicians, nurses, scientists or patient experts,  there to provide reliable answers and give information about health guidelines and treatment options. The forum also has researchers and scientists giving explanations and updates about technical information related to hepatitis B virus and treatment. 

The site is completely free! You can access the site even without making an account if you want to browse. However, in order to ask questions or post content, you will need to create an account. Empower yourself and join the other 200 users and immerse yourself in the supportive hepatitis B community!

Reference

  1. Jessop, Amy B. PhD, MPH; Cohen, Chari MPH; Burke, Monika M. RN; Conti, Molli BS; Black, Martin MD Hepatitis Support Groups, Gastroenterology Nursing: July 2004 – Volume 27 – Issue 4 – p 163-169 

Author: Evangeline Wang

Contact Information: info@hepb.org

Living with Hepatitis B

Sheree Martin Retires from the Hepatitis B Information and Support List

2 Comments

After 13 Years, our Mammablondie has retired as a listowner of the Hepatitis B Information and Support List.  Sheree Martin has been List Mom to thousands of hepBers who have come to us from all over the world.  Like a true mother, she was quick to give hugs, the cyber kind, just when we needed them most.  And when we squabbled, she was there to call “time out”.

As for the “information” component of our list, Sheree has contributed more than anyone else.  She has spent countless hours scanning the Internet daily for HBV research and news.  The result of her efforts is our Hepatitis B Research List. For those wishing for information only, you can select send a blank email to HBV_Research-on@mail-list.com

For a number of years the PKIDS organization hired her to do the same thing for them, provide them with daily bulletins about kids’ infectious diseases. Sheree donated the money she earned to our listserv in order to cover miscellaneous  expenses.

In the beginning days of the List, John Kirk and I recognized immediately what a gem Sheree was, and we invited her to join us as a third listowner. She was smart, she was a nurse, she had IT skills, she was a good writer, and she knew how to referee when the two male egos would wrestle.

Sheree lives in the same small town where she grew up, on the edge of the Appalachian Mountains.  She’s proud of what she calls her hillbilly roots.

We all got to know and love Sheree’s mother, Yvonne, when she accompanied Sheree to the Hepatitis B Foundation’s patient conferences.  Not only did Yvonne have HBV, but in 1999, Sheree’s only sibling, Mike, died of liver cancer associated with HBV.  Fighting HBV was a very personal battle for Sheree.

We’ll need two people to fill Sheree’s shoes on the List.  Yvonne Drazic (Australia) will be our new listowner, and Christine Kukka (Maine) will take over the Research List.

At home in that picturesque country village, Sheree will have more time to do what she loves most–  being a mother to her 3 sons, 2 grandsons, 2 dachshunds, and 1 beagle.

We won’t lose our List Mom completely.  “I’ll still be around,” Sheree promises.  I’ll be lurking in the wings.”

A big hug to Sheree,

Steve Bingham, Retired List Dad

If you or someone you know is living with hepatitis B, we encourage you to join this HBV online forum filled with information, support and compassion!

Baruch S. Blumberg Institute