Hep B Blog

Category Archives: Living with Hepatitis B

300 Million Reasons, About Hepatitis B, advocacy, Hepatitis B Advocacy, Hepatitis B Awareness, 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. 

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Cancer Awareness Month, Living with Hepatitis B

If it’s not broken, don’t fix it! A hepatitis B vignette.

The Scenario

Yufei Zhao is 45 years old and lives with his family in Philadelphia,   Pa. Yufei discovered that he had hepatitis B when he attended a community health fair with his family. Even though he was instructed to talk about his diagnosis with a doctor and learn more about possible treatment options, Yufei decided to do nothing as he did not feel sick. While he has health insurance through his employer, he never utilizes any health care services. He often skips annual wellness visits as he says he “never gets sick.”  

A few weeks ago, Yufei’s family noticed that he has been skipping meals frequently saying he’s full or not hungry. At his daughter’s urging, he decided to go for a visit. After conducting some more tests, his doctor explained that the chronic infection with the hepatitis B virus had progressed substantially, and he had developed cirrhosis. After an MRI diagnosis, it was revealed that Yufei had liver cancer.

The Hepatologist (liver doctor) explained to Yufei that the liver is an important organ and acts as a cleaning system for the body. It removes toxic waste, purifies blood, and helps to digest food properly. When the virus entered the liver, it made many copies of itself and started attacking healthy liver cells. This led to inflammation and weakened the ability of the liver to carry out its most essential tasks. Because he was never monitored for hepatitis B, the virus allowed tumors to grow in the liver which caused the cancer. When the tumors grow in size or number, it eventually spreads to other parts of the body and disrupts other vital processes as well. 

The doctor mentioned that liver cancer is often called the silent disease because symptoms may not always be present. Even with a hepatitis B, a person could look or feel okay but that does not mean the virus isn’t active and causing damage. When the symptoms do show up, it might be too late to prevent liver cancer. After discussing his options with the doctor, Yufei learned that the best treatment for him was to get a liver transplant.  

He weighed the pros and cons of getting a transplant and consulted with his family. Now, Yufei is placed on a waiting list for a liver transplant to become available. In the meantime, his doctor has suggested other methods to destroy the smaller tumors without surgery through radiation (ablation). Yufei continues to spend more time with his family as he hopes to respond well to treatment until a new or partial liver is available.  

The Challenge

Cultural Perceptions on Health & Well-being 

  • Yufei is an older male in the household and the backbone of the family. For this reason, he considers it an obligation to prioritize his family over his personal health. It is important to understand these cultural and social beliefs prevalent in many different cultures and households. 
  • Family members should be advised to encourage their loved ones (especially older family members) to take charge of their health. It is important to check-in with your loved ones and assure them that sickness does not necessarily mean weakness. Taking care of one’s health can mean taking charge of one’s future.  

Hep B and Liver Cancer

  • Hepatitis B is a virus that causes inflammation of the liver. Without proper diagnosis and treatment, the virus can continue to multiply and damage healthy liver cells. This can lead to inflammation and scarring of the liver. This prevents the liver from doing its most important functions to maintain overall health which may result in the development of harmful tumors.  

Liver Cancer is a Silent Disease 

  • Many people with hepatitis B or liver cancer do not show symptoms of sickness but that does not mean the virus isn’t present or not actively working to harm the liver. Eventually, the physical symptoms will become noticeable as the virus/cancer advances to a more dangerous stage. 
What can you do?

Get tested! 

  • The most important thing you can do to prevent liver cancer is to get tested for hepatitis B. Most liver cancers develop from undiagnosed hepatitis B infections. There are a lot of people who have hepatitis B and do not know about it because they have never been tested. Even if you feel healthy and okay, it does not hurt to get tested!
  • If you don’t have hepatitis B, the test can tell you if you are vaccinated or if you need vaccination (which can provide lifelong protection from ever getting hepatitis B and help prevent liver cancer). 

Get screened! 

  • If you have hepatitis B, it is critical to manage the progression of the virus in your liver. For this reason, it is important to go through monitoring of your hepatitis B infection, liver health, and screen regularly for liver cancer.
  • Discuss with your doctor if you are at high-risk and how often you should get screened. It is recommended to get an ultrasound every 6 months to check how the virus is impacting the liver. AFP testing may also be done with regular monitoring of the liver to check for the possibility of liver cancer. 

Get educated! 

  • Stay up to date with the latest research and information on liver cancer! If you have hepatitis B, you should know that there is no cure for the virus but there is a lot of research that shows what you can do to ensure you live a healthy and long life.
  • Take an active role in learning about the disease and how it can affect your health over time. Learn about fibrosis, cirrhosis, liver cancer staging, and available treatments for hep B infection.  

References
  1. https://www.hepb.org/research-and-programs/liver/screening-for-liver-cancer/ 
  2. https://www.cancer.org/cancer/liver-cancer/treating/by-stage.html#:~:text=Treatment%20options%20might%20include%20ablation,%2C%20and%2For%20radiation%20therapy. 
  3. https://www.cancer.org/cancer/liver-cancer/detection-diagnosis-staging/staging.html 
  4. https://www.hepb.org/research-and-programs/liver/risk-factors-for-liver-cancer/ 

300 Million Reasons, About Hepatitis B, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Treatment, Liver, Liver Cancer, Liver Cancer Awareness Month, Living with Hepatitis B

Ignore it till it goes away! A hepatitis B vignette.

The Scenario:

Woman is sick on couch, her husband is giving her an ice pack

Aroha Kawai just started a new job as a medical interpreter for Pacific Islander patients diagnosed with COVID-19. As a critical source of communication for the providers and the patients, she is often called to work night and weekend shifts. Aroha had a difficult conversation with the family members of a critical COVID-19 patient on whether they should discontinue ventilation support for the ailing grandmother. During this time, Aroha’s family noticed changes in her behavior. She stopped eating regularly, lost weight and repeatedly cancelled plans to go out. Aroha dismissed her family’s concerns as physical manifestations of the emotional burnout from work.

People are at a free hepatitis B screening event in a park.

Recently she attended a health fair hosted by her department at work. She approached a viral hepatitis screening booth and decided to get tested for hepatitis B. The following week, she received her results in the mail. Her results indicated that she had tested positive for hepatitis B. She shared her diagnosis with her mother who informed her that her grandfather died from liver cancer.  

Inside a doctor's office. A doctor is showing information about the liver. A woman with hepatitis B sits with her husband.

Aroha then followed up with her primary care doctor.  She discovered that she had chronic hepatitis B. Even though the ultrasound did not show any evidence of cirrhosis, her doctor ordered an imaging test (U/S, CT, MRI) to screen for liver cancer. Unfortunately, Aroha was diagnosed with early-stage liver cancer.  

Inside a hospital room. A man and child visit a woman with hepatitis B in a hospital bed.

Fortunately, the cancer had not spread and did not infect nearby blood vessels. Her doctor suggested a partial hepatectomy to remove the tumor safely as the rest of the liver was still healthy. Aroha decided to adhere to her doctor’s advice and successfully underwent the surgery. She has taken some time off from work to focus on recuperating from the surgery and spending time with loved ones.  

 

 

The Challenge:
  1. Dismissal of Symptoms:
    • Aroha initially ignored the physical symptoms of liver cancer. It is true that signs and symptoms may not necessarily be present.
    • However, it is crucial to take care of one’s health and never ignore warning signs. Fatigue, unintended weight loss, and loss of appetite are a few of the symptoms of liver cancer. 
  2. Cancer without Cirrhosis: 
    • It is possible to get liver cancer without cirrhosis. Therefore, it is always important to screen for liver cancer if you have chronic hepatitis B infection. 
  3. Importance of Screening
    • Liver cancer screening is a highly effective method to detect malignant tumors and prevent cancer for those living with hepatitis B.
    • Early intervention increases the survival rate significantly and stops the cancer from spreading to other vital organs. 
What can you do?
  1. Get Help!
    • If you experience pain or discomfort of any kind, it is important to reach out for help. Set up an appointment with your doctor and discuss your concerns.
    • There is a good chance you might be misunderstanding an important health issue for side effects of stress or emotional burnout. Do not ignore your symptoms or feelings.  
  2. Get Screened!
    • Hepatitis B is a leading cause of liver cancer, most of the time it is because someone did not know they were infected with hepatitis B or were not managing their hepatitis B infection.
    • Everyone should be tested for hepatitis B to know their status. Ask your doctor for a hepatitis B screening today.  
  3. Stay on track!
    • If you have hepatitis B, it is critical to manage the progression of the virus in your liver. For this reason, it is important to go through liver cancer surveillance regularly. Discuss with your doctor if you are at high-risk and how often you should get screened.
    • It is recommended to get an ultrasound with blood work every 6 months to check how the virus is impacting the liver.  This includes the alpha-fetoprotein (AFP) blood test to measure the levels of AFP in your blood as it may indicate the presence of cancer cells in your liver. This can also help detect any scarring or tumors. 

Don't ignore it until it goes away. Get help. Get screened for hepatitis B. Stay on track.

Resources and Acknowledgements:
  1. https://www.cancer.org/cancer/liver-cancer/detection-diagnosis-staging/signs-symptoms.html 
  2. https://www.cancer.org/cancer/liver-cancer/treating/by-stage.html 
  3. https://www.hepb.org/research-and-programs/liver/prevention-of-liver-cancer/ 

HBV, HDV, Hepatitis B Treatment, Hepatitis Delta (HDV), Liver, Liver Health, Living with Hepatitis B

What’s the Difference?: Herbal Remedies and Supplements vs. Western Medicine

What’s the Difference?: Herbal Remedies and Supplements vs. Western Medicine

Around the world, people consider the use of herbal remedies or supplements as a natural treatment for hepatitis B and/or D infection. These natural remedies have historically been advertised to boost the immune system and improve liver health. Herbal remedies or supplements are described as products made from botanicals or plants used to treat diseases and maintain health. They can be produced in a variety of forms including liquid extracts, teas, tablets/capsules, bath salts, oils, and ointments4.

Why do people choose to use herbal remedies?

The use of these products over time has social-cultural influences related to the distrust of and unfamiliarity with western medicine for management of hepatitis B or D infection. While herbal remedies have been used widely across cultures and contexts, patterns of racism, medical mistreatment, and inadequate delivery of care in western medicine have influenced the present state of treatment practices. In response to these barriers to sensitive and effective health care delivery, many groups such as Hmong and African communities often rely on herbal remedies and supplements to treat medical conditions and ease suffering.

Silymarin, milk thistle, and Kampo medicine

The distrust of western medicine has contributed to more widespread use of supplements such as silymarin (milk thistle) and Kampo medicine, as alternatives to manage hepatitis B or D infection. Many people believe that Silymarin can improve liver health through its antioxidant and free radical-fighting properties. Traditional Kampo medicine has been used for over 2,000 years to treat a variety of diseases including hepatitis B. One herbal treatment that is frequently used is bupleurum which many people believe can protect the liver or heal liver damage. Despite possible liver health benefits, neither supplement is a treatment for hepatitis B or D and may sometimes cause further harm to the liver4. It is important to note that there is presently no cure for hepatitis B.

False claims and bad interactions

Additionally, several alternative medicine companies often make false claims and testimonials to convince people to purchase expensive alternative treatments with false promises that are not based on scientific evidence. Herbal remedies and supplements may also interact with certain medications prescribed for those with hepatitis B and D, so it is important to seek the advice of a health care professional before use of any of these products3,4.

Strides in western health care

The long-standing hesitancy to participate in western health care is well-reasoned and firmly rooted in past wrongdoing on the part of often fundamentally racist institutions. While the western health care system remains far from perfect, it is important to remember that many strides continue to be made to correct the misdeeds of the past, and conversations around health equity and the social determinants of health (including racism) are becoming more and more common. Meanwhile, research has found that beliefs and misconceptions around western medicine can delay care and increase morbidity rates of hepatitis B in high-risk communities2.

It is vital for those living with hepatitis B or D to stay informed with scientific knowledge about supplements and herbal treatments to ensure these products are effective and safe in their daily life. The coordination of hepatitis B and D care by providers must do better to support those impacted by the viruses, in a way that is culturally sensitive and not dismissive of the harm that has been inflicted on communities of color and immigrant communities, who are more likely to be affected by hepatitis B and D1.  Health care professionals and other service providers must continually work to improve their cultural humility. In addition, health care institutions practicing western medicine must work harder to ensure care is equitable and safe, and to center the voices, stories, and insights of community members in their work to repair the impacts of structural racism and medical mistreatment that have caused such deep distrust in western medical treatments.

To learn more about effective hepatitis B and D medications, check out our Drug Watch page!

Disclaimer: Herbal products are not U.S. FDA-approved, and the Hepatitis B Foundation cannot endorse the usage of such products that lack regulation and scientific evidence to deem them both effective and safe.

References

  1. El-Serag, H., McGlynn, K. A., Graham, G. N., So, S., Howell, C. D., Fang, T., … & Thiel, T. K. (2010). Achieving health equity to eliminate racial, ethnic, and socioeconomic disparities in HBV-and HCV-associated liver disease. The Journal of Family Practice, 59(4 Suppl), S37.
  2. Mukhtar, N. A., Evon, D. M., Yim, C., Lok, A. S., Lisha, N., Lisker-Melman, M., … & Khalili, M. (2021). Patient knowledge, beliefs and barriers to hepatitis B Care: results of a multicenter, multiethnic patient survey. Digestive diseases and sciences, 66(2), 434-441.
  3. National Center for Complementary and Integrative Health website. Using dietary supplements wisely. (2019). Using dietary supplements wisely. https://www.nccih.nih.gov/health/using-dietary-supplements-wisely.
  4. US Food and Drug Administration. (2017). Information for consumers on using dietary supplements. https://www.fda.gov/food/dietary-supplements/information-consumers-using-dietary-supplements.

About Hepatitis B, Hepatitis B Awareness, Hepatitis B Prevention, Living with Hepatitis B

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. 

Hepatitis B Awareness, Hepatitis D Avocacy, Living with Hepatitis B

Elevate Your Voice

Almost 300 million people worldwide live with chronic hepatitis B, but most of their stories remain untold. Often this is due to the negative stigma surrounding the virus, fear of discrimination, lack of community awareness or understanding of the disease and lack of support for those who wish to speak out publicly about hepatitis B.

No one knows hepatitis B better than the people living with the virus. Elevating the voice of people who live with hepatitis B is so important to bring awareness to hepatitis, help fight discrimination, and keeping up the momentum to find a cure for hepatitis B. Storytelling is an important to way to talk about an individual’s journeys with hepatitis B.

Since 2017, the Hepatitis B Foundation has partnered with StoryCenter to host six #justB digital storytelling workshops for over 40 participants from more than 20 U.S. states and Canadian provinces. The #justB campaign empowers people with lived experience to share their stories with the goals of increasing awareness and advocacy around hepatitis B, decreasing stigma and discrimination, and promoting testing, vaccination and linkage to care and treatment.

The latest #justB workshop was held in Berkeley, Calif., from March 18-20, 2022. It brought together five highly motivated adults living with hepatitis B who wanted to learn how to share their stories to educate communities and inspire action.

We will be highlighting these patient advocates and their stories over the next few months. Here are overviews of Adama and Chelle’s stories:

Adama, who was born in West Africa and immigrated to the U.S. decades ago, recalls when he tested positive for hepatitis B and how he soon realized that the illness his mother suffered from must have also been hepatitis B. “As I began to learn about the virus, I realized, ‘Oh, I think that’s what killed my mom.” Having lost his mother to the disease, Adama knows the importance of testing, early detection and monitoring for those who are living with hepatitis B. “I take treatment, I learned how to take care of myself… But what about the people around me, in my community, who won’t even get tested? Everyone talks about HIV, about how to protect ourselves, but this hepatitis virus is too much ignored.”

Chelle, a Utah resident, speaks candidly in her story about the stigma she encountered after being diagnosed with hepatitis B in the 1980s. “I felt so isolated. I couldn’t even talk to my family… Sometimes I thought about all the stomach problems I had complained of as a kid. I had been adopted from the Philippines in the 1970s. I was tested for this and that, but not for hepatitis B. Testing for the virus wasn’t widespread at that time. I was called a hypochondriac when the doctors couldn’t figure out what was wrong.” Chelle is grateful that things have improved since then and that she was able to pursue a career in the medical field. But her experience still motivates her to continue speaking out and fighting against hepatitis B related stigma that persists around the world.

To watch the new #justB stories by Adama, Chelle, Wendy, DHE and FK, and to access the complete #justB video library with more information, please visit: www.hepb.org/justb.

How to Elevate Your Voice

Are you interested in sharing your journey with hepatitis B? The Hepatitis B Foundation has the B the Voice Story Bank which provides an online platform for people living with hepatitis B, their families, community health workers and health care providers to share their firsthand knowledge and experiences with a global audience. You can submit your stories using an online form, along with any photos and personal details you wish to share. Submissions are confidential and can be made without disclosing a person’s full identity.

We encourage you to share stories about your diagnosis, living with hepatitis B, access to care and treatment, stigma and discrimination, education and advocacy, support and caregiving, services and programs and other related topics to not only help raise awareness for hepatitis B, eliminate stigma and discrimination, but to also inspire others to be brave in their diagnosis.

How Can Providers Elevate Individual’s Voices?

It is important for providers to also help elevate peoples’ who are living with hepatitis B voices. Healthcare institutions, organizations, and departments must develop relationships with people living with hepatitis B to establish trust and listen to what they want to see be done in the hepatitis B world. Their opinions are critical to develop effective programming around hepatitis B education, vaccination, testing, and eventually elimination. 

About Hepatitis B, HBV, Living with Hepatitis B

Feelings of Sadness and Hepatitis B? – You Are Not Alone!

 

Why Did This Happen to Me? 

Being diagnosed with hepatitis B can be scary and maybe you feel like you can’t tell anyone, but you are not alone. Living with hepatitis B is more common than you think, about 300 million people are living with hepatitis B worldwide! You might be wondering how could this happened to me?

Did you know that hepatitis B is an ancient virus? It has been around for thousands of years, is most common in Africa, Asia, and the Western Pacific. And transmission of the virus is almost always from mother-to-child, due to the blood exchange during labor and delivery. Most people with chronic hepatitis B infection were infected at birth or during early childhood. There are other, less common ways hepatitis B can be transmitted through unsterile medical or dental equipment, unprotected sex, or unsterile needles.

Feeling Sad After Your Hepatitis B Diagnosis?

 Sometimes after our diagnosis, we might feel overwhelmed with emotions. These emotions could be anger, sadness, anxiousness, numbness, or maybe a combination of everything. It never hurts to ask someone for some help. Consider going to a therapist. Talking to a therapist, especially if you’ve always kept your hepatitis B a secret, can help you get a better handle on your hepatitis B diagnosis. It can be freeing to talk to another person and have them support you on your emotional and physical health journey. If you don’t have access to a therapist or prefer to be more anonymous, you can join online support groups. Hep B Community is a great resource if you are in need of online global support – they are dedicated to connecting people affected by hepatitis B with each other and with verified experts in the field, who provide trustworthy and accurate advice.

You can also incorporate healthy habits into your lifestyle like taking daily walks, mediation, or incorporating any exercise you enjoy. Eating healthy, with lots of fruits and vegetables can make you feel better inside as well!

Can I Take Anti-Depressants with Medication for Hepatitis B?

 Sometimes, if we have persistent sadness for a long time it can be diagnosed as depression. Luckily, depression can be treated with medication called antidepressants. Antidepressants generally do not harm the liver, unless you have severe, pre-existing liver damage (such as cirrhosis), are older, or are taking several medications at once.

According to research, about 0.5 percent to 3 percent of those taking antidepressants may develop very mild elevation in their liver enzymes (called ALT or SGPT), which indicate mild liver damage. It is a good idea to talk to your doctor about this. If you already have liver damage, or you/your doctor are concerned, your doctor can monitor your ALT/SGPT levels more frequently than usual during your first weeks of antidepressant treatment, especially if your ALT/SGPT level is already elevated.

The antidepressants that may cause the highest risk of moderate liver damage,  include monoamine oxidase (MAO) inhibitors, tricyclic/tetracyclic antidepressants, nefazodone, bupropion (Wellbutrin, also used for ADD and smoking cessation), duloxetine and agomelatine.Drugs with lower risk of causing liver damage include citalopram, escitalopram, paroxetine (Paxil) and fluvoxamine.

Among the most common antidepressants used today is fluoxetine (Prozac).  According to the National Institutes of Health LiverTox report,  in people with no pre-existing liver infections or damage, “Liver test abnormalities have been reported to occur rarely in patients on fluoxetine (less than 1 percent), and elevations (in ALT/SGPT) are usually modest and usually do not require dose modification or discontinuation.”

Feeling sad and depressed is normal reaction to receiving news that you have hepatitis B. However,  hepatitis B does NOT define you and a gentle reminder is that you can live a long and healthy life with hepatitis B.

About Hepatitis B, HBV, Living with Hepatitis B

Zero Discrimination Day

Every year, UNAIDS marks March 1st as Zero Discrimination Day. This year, Zero Discrimination Day highlights “the urgent need to take action to end the inequalities surrounding income, sex, age, health status, occupation, disability, sexual orientation, drug use, gender identity, race, class, ethnicity and religion that continue to persist around the world”.

Although hepatitis B affects about 300 million people worldwide, hepatitis B related discrimination still is pervasive. In fact, the Hepatitis B Foundation has been documenting these inequalities through our Discrimination Registry. Since May of 2021, we have documented over 250 cases of hepatitis B related discrimination from all over the globe. Of these cases, 213 individuals experienced discrimination personally and 151 knew of people who were discriminated against. Within these reports, people have described instances where they have been denied employment or lost employment due to their hepatitis B status or had been denied educational opportunities or immigration to another country. The top 10 countries where people have reported hepatitis B related discrimination are the Philippines, Nigeria, India, Pakistan, United States, Ghana, Uganda, Ethiopia, Bangladesh, and Sierra Leone. The Hepatitis B Foundation is aware that discrimination is happening around the world and encourages people to report any discrimination on the registry here.

Notably, the United States is in the top 10 countries where people have reported hepatitis B discrimination. Most of the reporting within the United States comes from individuals in the military living with hepatitis B. Currently, the military in the United States and many countries unethically prohibits individuals with hepatitis B to serve due to outdated guidelines. Now, since most individuals within the military setting should be vaccinated against hepatitis B and with the accessibility of hepatitis B antiviral therapy which can control the virus, the risk of transmission is extremely low. These guidelines should be updated to reflect national policies in the United States that prohibit discrimination. In the broader setting of the U.S. outside of the military, it is illegal to discriminate against people living with hepatitis B. The Americans with Disabilities Act (ADA) prevents employers, institutions, and other organizations from discriminating against an individual based on their hepatitis B status. The Hepatitis B Foundation hopes to one day end hepatitis B related discrimination not only in the United States, but also globally.

Ending hepatitis B related discrimination globally will require incredible effort from multiple partners like governments, organizations, community advocates, and people living with hepatitis B. The first step is demonstrating that discrimination is a serious issue around the world that impacts one’s life in a variety of ways, both economically and psychologically. The discrimination registry that we launched in 2021 will help us document discrimination around the world and help us determine areas of focus. We want to publish and share what we find from this registry so academic partners, policy leaders, advocates and health professionals can be made aware of the current situation and challenges people living with hepatitis B face. We hope to maintain this registry so we can assist people experiencing hepatitis B related discrimination. And we want to create a global movement to enact change, advocating for ending policy and practice that allows for discrimination, and instituting policies that protect people with hepatitis B worldwide. But we need your help – people living with hepatitis B, and people who have faced discrimination, are the most important partners in this effort! We need you as partners, to maintain the registry and fight hepatitis B related discrimination, and ensure the fight for equality continues. We are currently fundraising to keep the Discrimination Registry going and expand on these plans to help fight discrimination globally.

This fight against discrimination will take some time! Change does not happen overnight. Improving awareness, growing an advocacy movement, engaging leaders and decision makers, and especially changing policy, can take years – but we must continue our work together. The Hepatitis B Foundation has long been dedicated to assisting in discrimination related causes. In fact, the Hepatitis B Foundation played a key role in a landmark settlement by the U.S. Department of Justice that established protection for people with hepatitis B under the Americans with Disabilities Act (ADA). That effort took three years to see policy change once we took up the fight, but it was worth it to have protections in place for people with hepatitis B. Learn more in our Know Your Rights section.

On Zero Discrimination Day, March 1st, and moving forward, please continue to use your voice to speak out against discrimination. If you need assistance please fill out the Discrimination Registry to document your experience and the Hepatitis B Foundation will try its best to assist you and navigate you through it.

About Hepatitis B, Living with Hepatitis B, Relationships

How Do I Share My Status

Valentine’s Day is February 14th! Today is a day to express your love for family, friends, and your significant other.

When you are living with chronic hepatitis B, starting a loving, romantic, relationship and initiating sex can be fraught with stress and difficult disclosures, before an intimate relationship can even begin.

To begin, living with hepatitis B only makes up a small part of who you are, it doesn’t define you. As guest blogger Lindsey says, “Having HBV is only a small facet of who you are, and not a reason to give up on a loving relationship. A partner who accepts you as you are and wants the best for you is someone who will not see HBV as a barrier to getting to know you.” Someone who genuinely cares about your wellbeing will understand how vulnerable you needed to be to tell them you are living with hepatitis B and react appropriately. And remember, your partner might also have something to disclose to you! So, you should think about how you would respond to them, as well.

Although the most common mode of transmission worldwide is from mother-to-child, hepatitis B can be spread sexually. The hepatitis B virus can be transmitted through sexual fluids like semen and vaginal fluids, in fact, it is 50x-100x more infectious than HIV. It is important to note that hepatitis B is more common than people think, affecting about 300 million people worldwide. Most of the time, people were infected at birth due to exposure to blood from their mother, or at an early age due to an unsafe injection or medical/dental procedures, or even direct contact with blood inadvertently exchanged by an infected caregiver or another child while playing. Since the most common symptoms are no symptoms, most people are completely unaware that they have hepatitis B for decades.

How Do I Tell My Partner I Have Hepatitis B?

So how do you disclose your status to a partner you’re about to get intimate with? This can be a nerve-wracking situation because you don’t know how they will react. Also, when is the right time to tell someone you are living with hepatitis B? Sharing your status is an important step to take. It establishes trust within a relationship dynamic. Disclosing should be relatively the same for people who are seriously dating or casually dating.

  • Firstly, you should know some basics about hepatitis B in case your partner has questions about it. Bring a fact sheet with you to the conversation to share with your partner. This can help them digest more information.
  • Practice the conversation with someone who already knows your status, like a family member or a close friend. Prepare for best and worst scenarios.
  • Choose a meeting place you feel safe and comfortable with. An in-person conversation would be best, but you can always do it over the phone: video calling, calling, or texting are all good options too!
  • Ask them to keep your hepatitis B status confidential! Your health is your health to tell, no one else’s!
  • Give your partner personal space and time to process what you just told them and let them ask questions for clarity.
  • Look after your mental health after you tell your partner.

You might wonder: How do I start this conversation? Here are some conversation starter ideas:

  • Start out on a positive note – “I’m really happy with our relationship…” – sharing your hepatitis B status is something that is positive because it demonstrates trust and respect.
  • You can start talking about hepatitis B to gauge to their reaction and depending on their reaction you can decide to disclose or decide it is not the time or the person to do so.
  • Use this as an opportunity to talk about sexual health in general – it is always a good idea to share sexual health history with potential partners!
  • Be honest and direct: “I am living with hepatitis B, I take medication and manage it. If you have the vaccine you are immune to hepatitis B.”

Once you find someone worthy of your time and energy you want to date, they should consider your health to be an important priority. To reiterate: your hepatitis B status does not define you. You are more than hepatitis B and any person who you should date will know that.

About Hepatitis B, Living with Hepatitis B

Should I Take Milk Thistle?

 

 

 

Silymarin or “milk thistle”, an herb and extract of milk thistle seeds, is a supplement commonly taken by people living with hepatitis across the world, yet its proven benefits remain controversial. It is not a treatment for hepatitis B or D, nor has it been shown to have any effect against fighting these viruses. This herb is believed to have possible benefits on liver health due to its antioxidant and free radical fighting properties, although no studies have found a consistent positive effect on viral load or fibrosis scores.

U.S. National Institutes of Health (NIH) has published a directory of what scientific research has discovered about common herbal supplements. Probably the most popular herbal supplement pitched as a liver remedy is milk thistle, and its extract silymarin. The NIH milk thistle report found, “Results from clinical trials of milk thistle for liver diseases have been conflicting or haven’t been clinically meaningful. Some of the studies have been of poor quality, too.” The overall finding is that scientific research has not found any benefit of taking milk thistle.

Silymarin is often taken by patients or suggested by their health care provider during or after interferon treatment ends, presumably with the hope of a protective or anti-inflammatory effect on the liver. But a 2013 study on hepatitis C patients unsuccessfully treated with interferon (the standard treatment for hepatitis B and D coinfection) found no significant difference in silymarin’s ability to lower ALT scores over placebo (a pill with no active drug ingredients)1. Another 2013 metanalysis reviewed 8 studies which tested silymarin against a placebo and looked for measurable levels of improvement in ALT scores, of which the results were mixed and inconsistent1.

However, studies have found improvements in patients’ self-reported quality of life after taking silymarin 2 – perhaps due to decreased stress or self-perceived control over their health. However, a 2012 study which randomly assigned patients either silymarin or placebo to measure possible declines in ALT or hepatitis B and C virus levels, in addition to self-reported quality of life, found little to no improvement in any of these outcomes3 regardless of whether they took milk thistle or a placebo.

Due to mixed scientific findings and lack of proven effectiveness, people living with hepatitis B and/or D should not rely on silymarin as a treatment for these viruses and should discuss any new prescription recommendations with their doctor. Silymarin will not counterbalance damage done by hepatitis B or D viruses. While some studies have found silymarin to be well tolerated with low side-effects3, individual reactions and side effects can vary. In the U.S., supplements including silymarin are not regulated by the Food and Drug Administration (FDA), making the true contents of supplements unknown. For these reasons, patients should be cautious about supplements.

So, what can you do instead? Take your antiviral medication as directed by a doctor, eat a liver friendly diet, and exercise. Check out our blog on healthy habits you can incorporate into your lifestyle.

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Disclaimer: Herbal products are not U.S. FDA approved, and the Hepatitis B Foundation cannot endorse the usage of such products that lack regulation and scientific evidence to deem them both effective and safe.

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  1. Fried, M. W., Navarro, V. J., Afdhal, N., Belle, S. H., Wahed, A. S., Hawke, R. L., Doo, E., Meyers, C. M., Reddy, K. R., Silymarin in NASH and C Hepatitis (SyNCH) Study Group (2012). Effect of silymarin (milk thistle) on liver disease in patients with chronic hepatitis C unsuccessfully treated with interferon therapy: a randomized controlled trial. JAMA, 308(3), 274-82.
  2. Polyak, S. J., Ferenci, P., & Pawlotsky, J. M. (2013). Hepatoprotective and antiviral functions of silymarin components in hepatitis C virus infection. Hepatology (Baltimore, Md.), 57(3), 1262-71.
  3. Rambaldi, Andrea & P Jacobs, Bradly & Gluud, Christian. (2007). Milk thistle for alcoholic and/or hepatitis B or C virus liver diseases. Cochrane database of systematic reviews (Online).

Baruch S. Blumberg Institute