Hepatitis B/D Vignette: Navigating the Journey with Hepatitis B and D 

Vignettes are stories inspired by real-life events that affect many people living with hepatitis B/D.

The Scenario

Adrian got hepatitis B at birth as his mother carried the virus. His mother was unaware of her status and was unable to get the birth dose for her son. Living in a remote town in Romania, Adrian found it difficult to talk about his condition with others, worrying that attitudes may change towards him. He lives in a small town and conditions like hepatitis B are often stigmatized and considered taboo.  

Taboo and Stigma

Due to the taboo and stigma surrounding hepatitis B, Adrian tried to distance himself from the disease. While his family provided support and encouragement, he was unable to cope with the emotional and financial burden of living with hepatitis B. As he got older, Adrian avoided meeting with his doctor to monitor his viral load and check his liver health. He stopped taking his medication without consulting his doctor.

Disclosure

In later years, Adrian relocated to the U.S. for work. As his workload increased, Adrian was able to suppress his memories of living with chronic hepatitis B. He did not take medication for years and “felt fine.” He never shared anything about his diagnosis with friends, colleagues, or other intimate partners.  

Diagnosis

In the last couple of months, Adrian has been experiencing sharp pain in his abdomen. He took Tylenol but it didn’t help. As the pain worsened, he was unable to go to work or focus on his social activities. Reluctantly, Adrian visited his doctor who informed him that his viral load had increased significantly. After more testing, he found that he tested positive for hepatitis Delta (HDV), a rare but more severe virus. The doctor explained to Adrian that coinfection with HDV can lead to severe liver disease, and he should consider treatment right away.  

What is the challenge?

  • Adrian found it difficult to accept his diagnosis or share about his condition because of the stigma surrounding hepatitis B (along with other sexually transmissible conditions) in the small town where he grew up. Not only does this lead to self-consciousness and emotional instability, but it also makes it difficult for people to seek testing or care.

  • Adrian had been taking medication for a long time to manage his viral load. Without consulting with his doctor, he decided to stop treatment. Aside from worsening the physical symptoms of the virus and leading to potentially serious liver disease, it is crucial to talk about treatment options with a provider. Starting or stopping treatment is a medical discussion that should take place with your doctor before taking action.

  • Adrian was reluctant to share his diagnosis with others. While that is understandable, it is important to talk about your diagnosis or use protection with sexual partners as it is possible to spread the virus to others through sex.

What can you do?

  • Throughout his life, Adrian had difficulty coming to terms with his medical diagnosis. He tried to avoid it but was unable to escape from it. It is important to understand that hepatitis B is not a death sentence. It is possible to live fulfilling and healthy lives with hepatitis B with proper management. There are community support groups and storyteller networks that help people acknowledge their condition and find meaning through their diagnosis.

    https://www.hepbstories.org/

    https://www.hepbcommunity.org/

  • The decision to start or stop treatment is not something a patient should make on their own. There are many reasons to start and stop treatment and these should be discussed with a health care provider. Hepatitis B is a lifelong condition and needs to be managed effectively to prevent any serious outcomes like liver disease or liver cancer. Before thinking about stopping treatment, consult with your provider and discuss your options.

  • Hepatitis Delta is a rare but more dangerous virus as it can lead to serious health outcomes. Being co-infected with HDV further burdens the liver and weakens the immune system. It is important to learn that people living with hepatitis B are also at risk for HDV (you can only get HDV if you already have hepatitis B).

    https://www.hepb.org/research-and-programs/hepdeltaconnect/