Patients lived experience to be highlighted in vignettes

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Hi Everyone,
@Bansah1 here. I am in the early stages of a school project where I am trying to collect patients’ lived experiences and turn them into vignettes. At the end of the project, these vignettes will be published on the Hepatitis B Foundation’s website to help increase awareness and education. Interested patients/persons can submit their responses to the 3 questions below.

Please indicate the name you would like used and your location (country is preferred). Sharing anonymously is an option available. Let me know.

If anyone is interested and consents to HBF using the vignettes at the end, submit your responses to this topic. I am looking for about 4-6 stories to add to what I have.

Questions:

  1. How did you find out about your hepatitis B?

  2. How has this impacted you?

  3. Any message or advice you would like to share?

Thank you all for your help, and I look forward to your responses. Bansah1

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  1. How did you find out about your hepatitis B? My mother in law died of HCC.

  2. How has this impacted you? We all tested positive . Wife and two sons . Mine come a different region and hep B with Genotype C which is more virulent than B.

  3. Any message or advice you would like to share?

Need to get monitored both ultrasound and MRI. Can’t rely on anti viral drug that only suppresses the virus . will lead to HCC. We need functional cure

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Hi @Ccheng8346,
We are all unique in that each of us finds our status in so many different ways. We are all impacted by this virus, yet we all have different stories and experiences. We need to remain hopeful. Thank you for your quick response. I appreciate it. Bansah1

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Was your mother in law on antiviral treatment if yes then for how long???

What was the status when she started treatment??

Was she on regular checkup?? Like ultrasound or fibroscan???

@Ccheng8346

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She was the first case in the family that was infected with Hep B . She developed HCC and died of HCC .

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But when was she diagnosed..?? Was she taking antivirals..?

@Ccheng8346

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That’s way back 20-30 ago when antiviral was unavailable . Also, it was late when she was diagnosed with liver cancer at age 73

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How did you find out about your hepatitis B?
I don’t remember a single moment when I was told. As a child, I gradually realized something was different because my mother took me to many doctors, both TCM and Western, across the country. I also received interferon injections at home when I was quite young.

How has this impacted you?
Ninety-five percent of the time, I forget I have CHB. About 4 percent of the time, I worry about liver cancer, treatment options, social stigma, and whether I can afford long-term care. The remaining 1 percent of the time, I feel extremely fortunate that my family supports me, my career has not been affected, I can currently afford treatment, and I’m stable.

Any message or advice you would like to share?
I didn’t know TAF needed to be taken with food. My original doctor even told me it wasn’t necessary, until I pointed out that the medication instructions say otherwise, and she had no response. It makes me wonder whether TAF was less effective for me because I wasn’t taking it with food. Please make sure to take your TAF with food.

If you can use an alias, you can use my alias here. Otherwise I would like to share anonymously. Location is USA.

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Thank you for your email. I hope you continue to get better and remain stable for a long time. We need to remain hopeful and optimistic. Not easy, but we have to keep trying.
Best, Bansah1.

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