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Tag Archives: living with hepatitis B

The Purpose and Process of Storytelling

 

 

 

 

 

 

 

 

 

If you live in the U.S. and want to learn how to share YOUR hepatitis B story in a powerful and effective way to help raise awareness, educate communities, and inspire action around hepatitis B, consider applying to our next #justB digital storytelling workshop 

The #justB campaign empowers people with lived experience to share their story and use their voice to help increase awareness and advocacy around hepatitis B, combat stigma and discrimination, and encourage more people to get tested, vaccinated, and/or linked to care and treatment. Beginning in 2017, the Hepatitis B Foundation has partnered with StoryCenter to host six #justB digital storytelling workshops for over 41 participants from across 22 states in the U.S. and Canada. The #justB campaign includes stories that have been translated and published in 13 languages in addition to English – Mandarin, Cantonese, Vietnamese, Korean, Arabic, French, Mandingo, Twi, Yoruba, Tagalog, Khmer, Mongolian, and Chuukese.  

Attending a #justB digital storytelling workshop is a unique and uplifting experience that brings together people directly affected by hepatitis B in a supportive, small group environment (no more than 10 participants), where they can feel free to share openly about their experiences while learning to create short videos or “digital stories” in their own words. During the workshops, participants are guided through a “Story Circle” activity, receive feedback on selecting specific parts of their story to develop their script around, record a voiceover, gather photos and video clips, and combine these materials into short videos around 3-4 minutes long. After the workshops, participants become part of a growing community of more than 40 other storytellers who receive ongoing communications, resources, and opportunities to stay connected and engaged in hepatitis B advocacy and education.  

 

 

 

 

 

 

 

The storytellers gather around for a storytelling workshop.

 

Over the years since the initial launch of #justB, we have seen just how powerful storytelling is, and how personal stories can be used to promote greater awareness, openness, and discussion around an often stigmatized disease like hepatitis B. We have also learned that the process of storytelling – and participation in storytelling workshops – has a positive and lasting impact on storytellers themselves.  

For example, the following quotes (collected from storyteller interviews and audience surveys) highlight the impact that the #justB campaign has had on participants and viewers. 

Quotes from storytellers about their experience: 

  • “In the weeks after the workshop, I felt a lot more hopeful and supported.”  
  • “It was an awesome, life-changing experience and I look forward to doing more work with the Hepatitis B Foundation and various other organizations to raise Hepatitis B awareness and prevention.” 
  • “This storytelling workshop was a true blessing for me personally. Before, I felt isolated and disconnected. After the workshop and getting to know how Hep B has affected others, I feel a great sense of family and inclusion. My true hope is that our stories can change how others not affected view those who are and that more emphasis would be placed on the treatment and cure for this condition.” 
  • “I remember feeling very lonely when I first got diagnosed. I was, I don’t know, a leper or something but then to hear other people having gone through that same fear and that same sort of feeling of isolation, just super impactful. It made you recognize that this doesn’t have to be a lonely or solitary thing. There are other people who have the same struggles and experience the same fear, I guess, that you did. That was incredibly powerful, and definitely something that I didn’t know I was missing that.” 
  • “The workshop definitely changed my perspective on the power of storytelling for mental health.”  

Quotes from story viewers / audience members:  

  • “I really enjoyed the personal stories. Hearing first person experiences re: HBV has such a significant impact and realism that is not accessible when approaching the topic from a clinical or third person perspective. It’s very sad but powerful to hear the experiences re: stigma, isolation, perseverance, and how they are fighting for their families, friends, and others.” 
  • “It was very informative. I came in not understanding what it really was. Now I understand how important vaccinations are. It is an important topic to discuss, and I want to let my friends and family know how serious the problem is.” 
  • “The stories were extremely powerful. That paired with data and key messages [was] a very effective presentation.” 
  • “JustB storytelling was very moving! The diversity in storytellers was great.” 
  • “Very touching, impactful and inspirational! Thank you to all the storytellers for your bravery!”  
  • “The storytelling was wonderful. I will definitely be using the stories in our education and awareness outreach.”  

 

 

 

 

 

A postcard featuring quotes from the Dai’s Story.

 

Learn more about our current storytellers at www.hepb.org/justb. To apply for the workshop, fill out this form: https://storycenter.wufoo.com/forms/zyu5qsb02lscca. We accept and review applications on a rolling basis until all spots are filled.  

The next #justB workshop will take place this summer 2023 (tentatively in late July or August) and will be held in either Washington, DC or in the Doylestown/Philadelphia area. All travel, accommodations, and meals will be coordinated and paid for by the Hepatitis B Foundation. Participants will also receive a honorarium for completing the workshop.  

The Hepatitis B Foundation recently launched a new website for our storytelling campaign. Visit https://www.hepbstories.org/ to learn more!

If you have any questions or feedback, please contact Rhea Racho, Program Director – Advocacy and Engagement at rhea.racho@hepb.org. 

Can I Breastfeed While Living With Hepatitis B?

Every year, the first week of August celebrates World Breastfeeding week. World Breastfeeding week highlights the importance of breastfeeding and its benefits including nutrition, food security, child development, and the reduction of inequalities.  

Breastfeeding is a widespread practice found across cultures and borders. Considered to be the best food choice for babies, breast milk is full of essential nutrients to help babies fight off infections. It also lowers the risk of developing serious health problems like asthma, obesity, type 1 diabetes, and sudden infant death syndrome (SIDS). Breastfeeding also helps the mother bond with the child and supports the baby’s emotional health. Not only that, but mothers who breastfeed reduce their risk of developing high blood pressure, type 2 diabetes, ovarian cancer, and breast cancer. It is encouraged for mothers to breastfeed their child exclusively for six months.  

However, it is important to consider that breastfeeding may not be the best option for everyone. There are many reasons why a woman may choose not to breastfeed her child including: health issues, lack of support, lack of time, short parental leave, and poor mental health. Formula can be a great, healthy, alternative to breastfeeding when breastfeeding is not possible.  

Globally, 300 million people are living with hepatitis B, and many do not know their status. Hepatitis B is a virus that infects the liver and damages healthy tissues and cells. This makes it more difficult for your liver to do its job of making sure your body is free of toxins and breaking down food so you can use it for energy. Globally, hepatitis B is most commonly transmitted from mother to child due to the blood exchange during childbirth, but may also spread through the following routes: 

  • Sharing needles or unclean objects like razors and toothbrushes 
  • Unsafe tattoo or piercing procedures 
  • Unprotected sex 

Learn more about transmission here!  

While some health issues can prevent women from breastfeeding their baby due to the fear of passing the disease or illness to their child, this is not the case with hepatitis B. Women living with hepatitis B can safely breastfeed their baby and are encouraged to breastfeed.  

Also, to prevent mother to child transmission of hepatitis B it is important to make sure the child receives the first dose of hepatitis B vaccine called the hepatitis B birth dose within the first 24 hours of birth. An extra step towards prevention can also be taken for mothers who have hepatitis B infection, which includes giving their baby the hepatitis B birth dose and hepatitis B immune globulin (HBIG) within the first 24 hours of birth. HBIG is not always available in every country and might be difficult to get. If it is not possible to get HBIG, be sure your child gets the hepatitis B birth dose within the first 24 hours of delivery to prevent transmission. HBIG is a shot that helps to protect your baby from developing hepatitis B by teaching the body to fight off the infection. The vaccine or birth dose is safe, effective, and provides a lifetime of protection to babies, so they do not get hepatitis B in the future. The birth dose is given in 3 doses and follows the schedule below:  

  • 1st dose- given right after birth but within 24 hours 
  • 2nd dose- given in at one month of age 
  • 3rd dose- given when the baby is 6 months old 

The infant hepatitis B vaccine schedule can vary depending on where you live – you can see the schedules here. 

You can learn more about the hepatitis B vaccine here!  

It should be noted that until a baby completes their hepatitis B vaccination series, if the nipples are chapped, cracked, or bleeding, it is best to avoid breastfeeding until the nipples are completely healed. Because hepatitis B is transmitted by blood-to-blood contact, there is a small risk of transmission to unvaccinated babies if the nipples are bleeding. During this time, it can be beneficial to seek guidance from a lactation consultant and switch to a different feeding method (formula or donor human milk).  

It is safe to breastfeed if you are living with hepatitis B, you will not transmit hepatitis B to your infant. If you still feel nervous about breastfeeding your baby, formula is the best alternative to breast milk.  

References 

https://worldbreastfeedingweek.org/  

https://www.hepb.org/treatment-and-management/pregnancy-and-hbv/breastfeeding/  

https://pubmed.ncbi.nlm.nih.gov/23383145/  

https://www.cdc.gov/breastfeeding/breastfeeding-special-circumstances/maternal-or-infant-illnesses/hepatitis.html#:~:text=Is%20it%20safe%20for%20a,within%2012%20hours%20of%20birth. 

If Hepatitis B Is Sexually Transmitted, How Come My Partner Isn’t Infected?

Image courtesy of Canva

I thought hepatitis B was sexually transmitted? I just tested positive, but my partner tested negative, we’ve been together for years, what gives?

This question is a common one. Hepatitis B can be transmitted sexually, so why do some people — who were not vaccinated — never get hepatitis B from their sexual partners?

It comes down to factors, such as the type of sexual activity partners engage in, the viral load (HBV DNA) of the infected partner, and who is on the receiving end of infectious body fluids, especially blood (which contains the most virus), and semen.

Having one partner infected, while the other is not, can add more stress to an already traumatic hepatitis B diagnosis. “It was very confusing and made me question how was it possible I was the only one infected,” said a woman who tested positive while her husband tested negative. “I thought it was possibly a mistake, maybe I was a biological anomaly, which of course I was not.”

Let’s look at the factors that may play a role in transmission of hepatitis B infection through sexual activity.

Viral load: Semen, vaginal fluids and blood all contain the hepatitis B virus (HBV), and the higher the viral load in the blood of an infected individual, the more infectious they are considered to be. Having an undetectable viral load might reduce or eliminate the chance of transmitting the virus to someone during unprotected sex; research is still trying to assess whether a person with an undetectable viral load in the blood is able to transmit the virus through sex. This is a good reason for individuals living with hepatitis B to talk to their doctor about the benefits of starting antivirals if they have detectable HBV viral load in their blood; treatment which lowers the viral load in the blood might also serve as a prevention measure for transmitting the virus.

Once an individual tests positive for hepatitis B surface antigen (HBsAg), they should encourage their partners to get screened for hepatitis B, and vaccinated if they are still susceptible to the virus.

The timing of sexual activity: An infected person who is menstruating is more likely to transmit hepatitis B infection to an unvaccinated partner, because menstrual blood can contain higher levels of HBV than vaginal secretions. That is why dental dams and condoms are recommended to provide a reasonable barrier against exposure, during that time of the month.

The type of sexual activity: Certain sexual activities are far more efficient at transmitting hepatitis B virus than others. Oral sex appears to have a lower rate of hepatitis B transmission than vaginal sex. Anal sex carries a higher risk of transmission because of tears in the skin that can occur during penetration, which increases the likelihood of transmission of HBV to an unvaccinated partner.

Fingering carries a lesser risk, unless the infected partner is menstruating while the other partner has bruises or cuts on their hands that could allow entry of hepatitis B virus from the body fluid into the bloodstream. In such cases, gloves are highly recommended.

The hepatitis B status of the other partner: The “uninfected” partner could have already been infected and cleared the virus, or vaccinated as an infant. When a person is first diagnosed with hepatitis B, doctors often test his or her partner for only the hepatitis B surface antigen (HBsAg), which indicates a current hepatitis B infection. If they are negative for HBsAg, they are advised to receive the hepatitis B vaccine as soon as possible. However, this does not mean that they were never infected.

Testing for the hepatitis B surface antibody (also known as anti-HBs or HBsAb), and hepatitis B core antibody (HBcAb) is the only way to identify a past recovered infection or prior vaccination.

Hepatitis B is often called the “silent” infection because many people who get hepatitis B may not experience any of the alarming symptoms (like fever or jaundice). As a result, many individuals may never realize they were infected. A partner who tested negative for HBsAg, may actually have been infected in the past and cleared the infection and now has protective hepatitis B surface antibodies to forever safeguard them from infection. If they’re vaccinated without proper screening, then tested for HBsAb after vaccination, they will test positive for surface antibodies, without ever knowing that their antibodies resulted from a past infection, not immunization.

Bottom line, if one partner is diagnosed with hepatitis B and the other is not, it might seem unusual, but it is not uncommon. Just like any other virus, there is not a 100% chance of transmission with exposure. The undiagnosed partner should get tested using the 3-panel blood test (HBsAg, HBsAb, and HBcAb) and immediately vaccinated if they are still vulnerable to a hepatitis B infection (HBsAb negative).

The is safe, effective, and provides lifelong protection.

Take a quiz to find out how much you know about hepatitis B transmission: click here.