INTRODUCTION THREAD: People affected by Hep B

Just diagnosed or new to the community
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Hi @Tse,
Thank you for sharing your experience with us. The anxiety, fear, confusion, loneliness, and other feelings all sound familiar. Many of us have experienced this, and some do continue to experience those feelings. However, it gets a little better as time passes; one can adapt to the condition and manage it well. The beginning is always rough. Please don’t be hard on yourself, take it one day at a time.

If your doctor recommends treatment, please don’t delay it. Delaying treatment and waiting for a cure may not be great for your liver. We all want a cure, but that is not available today, and there is no guarantee of that happening in the next 5 or 10 years. While we remain hopeful, the best option we have is these antivirals. While they might not cure us, they can suppress the disease progression, which then reduces the risk of severe liver damage. This is still better than having nothing. It was no brainier for me to get on treatment, because the alternative might be worse (liver failure, cirrhosis, liver cancer, etc). None is a great option, as you can see. @Caraline is correct, and I agree with her perspective on this matter.

Why do you feel uncomfortable taking the antivirals? These antivirals are easy to take, one pill a day. Most patients have no side effects, and they are effective at slowing down the disease progression and reducing the amount of virus in the blood, which all help reduce the risk of liver damage.

Please, if you are or have been offered treatment, revisit this discussion with your provider. It is important because early treatment leads to a better prognosis for patients. Don’t be scared. You are not alone and will not be alone in this journey. We will be here to support you. Best, Bansah1

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My Journey with Hepatitis B

Hello everyone,

I’m new here, and reading your stories has brought me a wave of relief, like a heavy weight lifting off my chest. I want to share my own story, one that’s been a painful part of me for years, in hopes of finding connection and understanding.

Seven years ago, at just 17, I was diagnosed with Hepatitis B shortly after arriving in Canada from Kenya. The news hit me like a thunderbolt. I couldn’t believe it—I still struggle to accept it. How could I have this condition? I’d never been intimate with anyone. Back in Kenya, I was a devout Christian, spending my childhood serving in church, playing soccer, running marathons, and living a life I thought was pure. Yet, the lab tests were clear. I dove into research, desperate to find some other explanation, convinced there must be a mistake.

The doctors decided not to start me on medication right away. Instead, they gave me a vaccine to help my body fight the virus and asked me to return in six months. When I did, the devastating truth came: I had chronic Hepatitis B. In that moment, my world shattered. My dreams, my hopes, my faith—they all flickered before my eyes. I left the clinic heartbroken, crying out to God, “Why me?” I’d spent my life trying to live right, to honor my beliefs. At 18, just as I was stepping into adulthood, this diagnosis felt like a cruel punishment for a crime I didn’t commit.

The pain was so overwhelming that I considered ending my life. The only thing that stopped me was my identity as a Christian, my faith anchoring me to hope, however faint. For seven years, I’ve been on medication, praying for a cure, not just for me but for others who feel trapped by this illness. Growing up in Kenya, I stayed true to my values. In boarding school, I had chances to date, but my faith and a deep-seated aversion to casual relationships kept me focused on my beliefs. I thought I was protecting myself, only to arrive in Canada and face this crushing diagnosis.

Now, as I near my 30s, I’ve never been intimate with anyone. This condition has shaped every part of my life. If I stay silent and pursue a relationship, I risk harming someone else—a moral line I could never cross. But if I share my truth, I face almost certain rejection, no matter how deep the love might be. It’s a lonely, heartbreaking reality. I’ve kept this secret locked away, sharing it with no one until recently, when strange symptoms—twitching and jerking nerves all over my body—pushed me to seek help. I visited my doctor, and they took blood tests. I’m still waiting for answers, anxious about what’s next.

Finally, I opened up to my biological sister in the USA. I made her promise not to tell anyone, and as I shared my story, I heard her tears through the phone. She confessed she’d been diagnosed too, living in the same silent darkness. Together, we reached out to our four younger brothers, and they too confirmed they have Hepatitis B. We began to suspect our parents might be the source, though we’ve never had the courage to confront them. If they knew, the guilt could break them, and we can’t bear to cause them that pain. We believe they’re also in treatment but hiding it, just as we’ve been.

I always wanted to become a very big profiled individual i have many skills in business, I will stop it from there, but to get visas like in Europe or Asia with this condition , dreaming of becoming an expatriate living with this condition is a nightmare.

My heart aches for the life I dreamed of saving life specially for kids, having a loving marriage be, a partner to share my life with, someone I could give myself to completely. People often compliment my looks, calling me handsome smart and compassionate, but they don’t see the weight I carry, the depression that shadows me. When kind, beautiful women approach me, women with genuine hearts, I freeze. Opening up feels impossible, and the fear of rejection—or worse, judgment—keeps me silent. I worry I’ll spend my life alone, my story reduced to whispers and stigma.

Thank you for letting me share. I’m here, hoping to find strength in this community, to keep believing in a future where I can be free from this burden. Hope the cure is at the corner I will keep on praying for all of us, with the Rise of AI and advance technologies i think industries will be competing each other to bring cure soon as possible. Thank you all.

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May god be with you. Wishing you to overcome this virus permanently at the earliest.

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Hi @Lucas,
Welcome to the community and thanks for sharing your story. We hear and empathize with you. We all understand the challenge of having to live with hepatitis B. Here are a few things I will say:
The first is that you did nothing wrong and nor is a punishment for any crime you have or may have committed. This virus has been around and very prevalent in Africa and other parts of the world. We just don’t know about it. Like you, my siblings are all infected as well. I don’t think my mom (late) even knew she had this virus because it was not something that pregnant women were tested for during the time my siblings and I were conceived. I doubt your parents especially mom is even aware, so please try not to hold any ill feelings toward her. You might want to let them know so they can get tested.

On the relationship front, yes we must acknowledge that some patients could face rejection. But this is not the experience of every HBV patients. There are many patients on here who have been married for some years and have children. Don’t let this diagnosis stop you from doing anything be it relationship, work, etc,. You are more than HBV and there are many opportunities for you to explore. Self stigmatization and isolation is a big issue for some patients. We sometimes have in our mind that people will stigmatize, reject, or discriminate against us when we share about our status which might not be true most of the time. This fear holds us back from trying or doing the things we want to do. But we need to get past this fear. It is easy to say but I understand this can be challenging. Open up to people, get to know them, share your status whenever you are comfortable. Enjoy life as best as you can and don’t let this fear hold you back.

Please, do not be hard on yourself. This stuff can happen to anyone. HBV does not know or respect boundaries, faith, race, class, income or education. Try and take it one day at a time. Remain in care and remain hopeful.
Best, Bansah1

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Welcome @Lucas
Thank you so much for sharing your heartfelt story. I was excited to hear that you were a Christian.
I too am a strong Christian and believe in Jesus and follow him.
I’m so proud of you for not giving up your faith. It will be worth it in the long run.
I have been married, now Divorced, his choice, and have three children.
I met my husband, knowing I had Hep B Back in those days, 40 years ago, we did not know much about the disease. I did tell him and he was then vaccinated.
He didn’t reject me or show any emotion. I just said he could be vaccinated and that would stop him getting it.
I then went on to have children. In developed countries, babies are vaccinated at birth.
To answer to your other worries. Having HepB is not a reason to be denied entry into lots of countries. It’s not such a big deal any more because of vaccinations and medication, treatment.
Your future wife, because of her faith and love for you, having HepB, will not be an issue.
You may even find that they have been vaccinated already. If you find it is an issue, then she is not meant for you because love binds all things.
I hope to hear from you again
I’m in Australia
Many of us don’t know where we got the disease from. We must look to our future and look after our bodies.
Important to be monitoring your health for life.
Many blessings

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Hi everyone,

I’m new to this community, but have had hepatitis B for many years. I was adopted from China as a baby, and grew up in Toronto, Canada. I found out that I had hepatitis B at the age of 12 (my parents didn’t know either when they adopted me). The doctors said that I likely had the disease since birth. When I was diagnosed, my whole family got tested, and thankfully no one else had it. After that, they all got vaccinated.

When I was a child, I never had any symptoms, but went for checkups with a gastroenterologist every year. My liver enzymes were normal, and I was not on treatment. After I turned 18, my care got transferred from the pediatric system into the adult care system. Around this time, I had started to feel tired a lot of the time. There were a few weeks when it was a chore to get out of bed and go to work. There were days when I had no appetite, and had to basically force myself to eat. Unfortunately, the children’s hospital didn’t give me the tools I needed to be informed about my care, because I didn’t know that the symptoms I had could be associated with a liver flare. Luckily for me, I had my first appointment with a hepatologist at the adult hospital. They ran some tests, and found out that my ALT had gone up to 1278. When my doctor called me with these results, he told me to go to the ER.

After that experience, I was started on treatment with Viread, and I realized I needed to start taking my hepatitis B more seriously, and that I needed to learn more about the condition so that I would be able to advocate for myself in the future. I responded well to treatment, and my liver was able to heal itself, so I don’t have any fibrosis or cirrhosis now.

When I was a kid, my parents always told me not to tell anyone about my hepatitis B because they were afraid that I would face discrimination. Since then, I have told some of my close friends, and I haven’t had any negative reactions so far. I think it’s starting to get easier to share my diagnosis and my story with others. I’m very thankful to the doctors who got me on Viread, because it probably saved my life. I’d encourage other people to get tested and monitored by a doctor who has experience with treating hepatitis B. And while there’s no obligation to tell friends or strangers about hepatitis B, I still think it’s extremely important to share it with family members and sexual partners, because it could save someone’s life. :heart:

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Dear @Tse, @et5656, and @lucas,

Thank you all for sharing your stories and experiences around your diagnoses. Yes, sharing can be hard, but I hope you are all getting the support that you need from your family and loved ones. I wanted to follow up on some points:

No, there is no effort from industry to block a cure. To me, this wouldn’t make financial sense, the current antivirals are off-patent, so there’s no profit to be made to have people on long-term treatment. In many countries, they are one of the cheaper drugs on the market.

Moreover, I want to mention that many of the trials being done are in patients already on antiviral therapy. So in some cases, being offered a cure may depend on already taking the current treatments.

I myself have worked in Germany and the Visa process was very easy. They did not ask me at all about my hepatitis B, and indeed this is only something that is disclosed with your work doctor to determine if you are suitable for work in your given profession. I imagine many countries would have similar policies.

Great advice!

Hope this helps,
Thomas

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Welcome @et5656

Thank you for sharing your story,
You are right that it’s important to tell family members you are living with and future partner.
Ideally, everyone should be vaccinated.
Then we wouldn’t have to tell anyone. :woman_shrugging:
I find it hard to explain depression and anxiety.

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I am actually currently participating in a clinical trial to evaluate efficacy of a potential cure for hepatitis B, and I second what Thomas is saying — the trial I’m in requires patients to be on antiviral therapy with tenofovir or entecavir for a minimum of 6 months prior to starting treatment with the investigational study drugs.

Also @Tse taking one pill per day is not as much of an imposition as you might think. A lot of people take vitamins every day, but even if you don’t, you can easily add it to your morning routine, just like how you need to brush your teeth every day.

Hope this helps :slightly_smiling_face:

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Thank you for the kind support and sharing your experience with the treatment. I appreciate it deeply.

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Thank you for your kind words. The doctor i went to a year ago told me that i dont need to take the medication at that point but suggested repeat test after six months which i missed. This was some seven months ago. My viral load was extremely high, in the millions. Another doctor to whom i sent the results suggested Entecavir but i decided to stick with the previous doctor’s advice. I will do a consultation and blood works after two months to look for next steps. Thank you for the community.

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Thank you for the encouragement. I appreciate it.

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I can’t comment on whether you would be recommended for treatment, especially not without seeing the results from your liver function tests (but I am also not a doctor). In my case, I was HBeAg positive with viral load in the millions like you for many years with no liver damage, but eventually, my body started attacking the virus (and my liver). Even if you don’t start treatment now, the virus can be unpredictable, so it’s important to get blood tests every 6 months, and to be aware of the symptoms of an acute flare-up in case it happens to you. Here are some of the signs that the virus may be causing active liver damage.

  • Fatigue
  • Loss of appetite
  • Nausea
  • Jaundice
  • Upper right abdominal pain
  • Abdominal bloating (this is basically fluid retention in your abdomen)

If you have these symptoms, get blood tests done. You can start by going to your GP, or even an urgent care/walk in clinic. They should be able to order a comprehensive metabolic panel for you, which is a very common test that includes liver function tests. Keep in mind that you can have moderately elevated liver enzymes with no symptoms whatsoever, which can still cause damage to your liver if left untreated.

Good luck, and don’t be afraid to start treatment if it’s recommended to you. The drugs that are available are incredibly effective, and cause little to no side effects.

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Hi everyone. I’m Kehinde, a Nigerian, 24, male. And I’m so excited to have found this community because I have been searching for one since I got diagnosed and thanks to Reddit, I found y’all. I got diagnosed November last year a month after a one-time sexual encounter, my first actually. Even though I used protection(condom), I don’t know how I contracted it. Just perhaps, it’s resistant to condoms or I got it through oral sex performed on me.

I have been on the livoline medication since then but it’s been over 6 months now so I guess it’s chronic. I made peace with the reality that I have this virus but I only want to live healthy and focus on the present going forward. Only my twin brother and friends are aware of my condition, who I’m grateful for and I intend to keep it that way because of the stigma associated.

I know that there is so much to learn from here and I’m hoping to connect with everyone here, and the Nigerian community too. However, I’d love to hear so much about routine, habits, nutrition and diet from you guys here to keep staying healthy. Great job pulling everyone into this community together.

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Hi @Kehinde,
Welcome to the community. HBV is endemic and prevalent in Nigeria and sub-Saharan Africa in general so it is possible that you have had it all this while but you did not know. Unless someone is tested to find out , there is no way of knowing. Because HBV does not cause any symptoms until it is late, most people feel fine and have no idea they live with such a virus.

It is good to hear that you have made peace with it. It is also great to hear that your brother and friends have been supportive. It can feel lonely and challenging for newly diagnosed patients to process their status, glad you have support. There are no special diets for HBV patients. Eating healthy, avoiding drinking and smoking, avoiding greasy and oil foods, reducing stress, sleeping well, exercising, drinking coffee (black), black tea, etc. are all good things you can add to your lifestyle. Moderation is key and remember to remain in care. Both are really important. Keep us posted and don’t feel alone. We are here to support as much as we can. Thanks, Bansah1

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This is very encouraging thank you so much for your testimony madam :pray:

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Just so you know before arriving in Canada, I underwent extensive medical examinations through the International Organization for Migration (IOM) in kenya. Over the course of a week, I completed multiple blood tests, full-body examinations, X-rays, and screenings for STDs, including Hepatitis B. The IOM’s final report was clear: I had no significant health risks, and all tests, including for Hepatitis B, were negative. These rigorous checks left me confident in my health status.

However, upon arriving in Canada, my experience changed drastically. Without thorough examination or evidence, I was diagnosed with Hepatitis B, allegedly contracted in childhood—a claim that contradicts the IOM’s comprehensive testing. I was prescribed medication without proper consultation or attention to my medical history. I have not been sexually active in Canada, and I had no medical documentation proving this infection. This leads me to question the validity of the diagnosis.

I strongly believe this reflects a broader pattern where Black immigrants, particularly from Africa, are stereotyped as disease carriers. The assumption that we arrive with health issues feels like a modern form of discrimination or slavery, reminiscent of historical exploitation. It seems as though some in the healthcare system view us as subjects for testing or experimentation rather than individuals deserving of fair treatment because the place where they treat me is written lab research…

A particularly troubling incident occurred during the COVID-19 outbreak. I received a call from a healthcare representative stating that my case would not proceed anymore due to the pandemic, implying my health concerns were to be finished. When I challenged this, asserting that I knew never had the virus they , the representative abruptly ended the call. Later, they called back, vaguely and said we will have to reschedule your appointment in the near future and until then stay safe and then right after few weeks got a call and continued with the journey so guys help me understand this because sometime i feel like i should give up my citizenship and get back to africa i don’t want to be in a place where i don’t feel safe , I am a man but i cry everyday… having kids is almost impossible… taking all my future away … I dreamed of having a family , kids , never gone to the clubs or living reckless life in africa and top of all that i never came with the dignosis , why would they have to do this , is it me or just am over my head , please help me understand this please i beg you guys.

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Dear @Caraline ,

Thanks so much for sharing. I don’t want to sound negative, but I did some research, and it’s not easy to travel to Europe with this condition or find jobs abroad. I haven’t traveled at all since arriving in Canada. When it comes to women, I know it’s hard to talk about this situation anyways. If you don’t disclose it, it’s considered a crime, but even if someone gets vaccinated, you can still spread the virus that how insane this stuff is. You can’t even share toothpaste with a loved one. It feels like being the living dead, like living in a cemetery while still alive.

The only reason I haven’t given up is because I’m a Christian, and I know the Bible condemns taking your own life. Otherwise, I don’t see much reason to keep going otherwise. On top of this disease, we’re dealing with racism—I feel it, see it, and sense it everywhere: at work, on campus, and even in unfair arrests on the road for no reason. Add to that life’s bills and the economy, and I’m longing for my home country i feel now that my country is a luxury. I came to Canada hoping for a better life, but look at what’s happened can’t even go back in my country, dept on dept, leaving behind the cost of life and all.

Six months ago, I thought I was dead. I don’t know if it was a side effect of the medication, but I felt out of my body. I begged God to bring me back because I wasn’t ready. I heard voices from my childhood, people I knew, and it was peaceful. I was floating in space—not a nightmare or a dream, but realy felt in the proces of living out. It happened just as I was about to wake up. I had no strength, and it felt like the bed was a parachute pulling me down. When i came back i felt like someone coming out under water asphyxiated and took a looong breath. I never took any canabis in my life because some people i told them the story they ask me if i smoke, it sounded strange to them.

right then i started seeing the world differently and just live in the moment, help the one i can and give thanks to God. Still it hard realy hard

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@Lucas

I have not heard you can’t share toothpaste, toothbrushes are unwise to share Because they’ve been in someone else’s mouth. You could get the flu any sort of germs that they have in the mouth. But not toothpaste.
I was a family of five and we always used the same toothpaste.
Have you shared your experience with a doctor?
I’m not a medical professional but I’m wondering if there is something else going on and it would be wise to seek and share your thoughts with a health professional.
God did make them available to us for a reason.
Having HepB is not a reason to give up. People all over the world get sick and die. With HepB we can live a long fruitful life with a family. There is no reason not too.
Blessings

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Hi @Lucas
I think you are being too negative about this disease. Let me tell you what many doctors told me in the last 20 years I am affected by this disease:
If and only if you are under control of doctors, the chance of dying of a car accident is more than dying of hep B!

  • Taking one pill a day, is the easiest thing you can do in the world!
  • You do not need to share this to anyone if it is not necessary. Because people are not aware of the details of this and only scared of the name of it.
  • I personally told my partner and he didn’t rejected me and he just renew his vaccination. So, if you are sure that you LOVE someone, share this with them! and assure them with enough information about vaccine.
  • I also delivered a healthy child with vaccine and immunoglobine.
  • the chance of infecting other people is zero, if you take your medication and they are vaccinated.
  • I immigrated to the Netherlands and I work here freely and did not have any problem anywhere.
  • I work in IT, and what I see in the AI advances, we will have the cure sooner than what we expect!
    So, all in all, just be under control of doctors. And live your life as a healthy person!
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