Help help me understand this disease as someone who was recently diagnosed

Hi all, it’s a pleasure to have found a place with people who face the same health challenge as I do. As someone who was recently diagnosed with Hepatitis B, I have been living in fear and uncertainty. This diagnosis has taken the life out of me. Every morning, I wake up with the fear of death lingering in my mind. I hope that you all can support me through this journey. I also have few questions and would appreciate any help I can get as it relates to answering my question.

  1. What is it like living with Hepatitis B on a daily basis
  2. Can you travel to countries like to USA and UK and other Europe countries with such conditions? I live in Africa.
  3. Is there any hope for a cure? If yes how soon could we anticipate it?
  4. Can I moderately drink alcohol with my condition? I’m someone that could drink maybe once a month.
  5. How to avoid stigma
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Hi @Acool,
Welcome to the community and we are happy to have you. There have been many discussions on the platform, take your time to check some of them out as they might be helpful.

Your first question depends on the person. Yes, we all share the same disease our journeys and experiences might differ greatly. The initial reaction after diagnosis is fear, anxiety, depression, some mood swings, anger, self-isolation, frustration, etc. and this can come and go with no triggers. But it gets better after some time when people come to accept this diagnosis and understand what they have better. It takes time so you have to be patient. If these feelings begin to affect your life, job, friendships, etc. then you might need to talk to someone. All these are going to differ among HBV patients.

Yes, many countries do not deny you a visa for having HBV, but some countries do. Most Middle Eastern countries for example will deny you a visa for having HBV.

There is currently no cure for HBV. However, there are effective antivirals to help slow down the progression of the disease. Some patients have been cured by these antivirals but the cure rates are low (less than 5% if I remember correctly). We remain hopeful for a cure one day, but we can’t be certain when that happens.

Occasional drinking is fine as long as you are not consuming a lot. It is best if you can avoid it. If not, then moderation is the key.

To avoid stigma don’t self-stigmatize yourself. Some people isolate themselves from society avoid seeing family members and friends, and stop doing what they love. That won’t be helpful. Getting stigmatized by others, only education can help. We can’t control how others behave, but with education and awareness, we hope things get better on this topic for patients. HBV stigma and discrimination are real so we need to acknowledge them.

I hope this helps. Take it one day at a time. Best, Bansah1

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Hi Acool,

First of all, welcome! It’s great to have you join our community. I understand how daunting a Hepatitis B diagnosis can feel, but it’s important to remember that having HBV is not a death sentence. Many people live full, healthy lives while managing this condition. By adhering to your prescribed medication and attending regular check-ups, you can maintain a normal lifestyle.

I was diagnosed in 2019 with over 167 million viral loads, and today my viral load is less than 10. I live a normal life now. I was once in your shoes and felt hopeless, but with the support of my family and this wonderful community, I was able to overcome my fears and couldn’t be happier.

Regarding your question, please do not drink alcohol, as it can worsen your condition. Most countries do not require an HBV test for visitor visas; however, it is typically required for permanent residency or work visas. For example, the USA will ask for an HBV test for work or permanent residency applications, but having a positive result will not automatically result in your visa being denied, as mentioned by @Bansah1. Middle Eastern countries might require a test and could refuse you a visa based on the results.

Living with HBV has little to no effect on your daily life; just make sure to take your medication on time.

Don’t hesitate to ask your questions; we’re all here to support each other through this journey. You’re not alone in this!

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Thank you so much for your kinds words. I have not yet been prescribed any medication yet base on the test that I did all my results are normal. I did an ultrasound yesterday and the results are all normal.

Hi friend, welcome to this shitty world of hep b. I feel your pain and frustration.
I hate living with this, important this that you won’t die today or tomorrow. This stuff is manageable, so the lifespan is usually 7-10 years less that for healthy people. But, stigma is around and it’s not going anywhere, so I would recommend not to tell anyone, but only your family. Not even friends, after telling them there is a big chance you won’t have one. With respect of a cure, look at some threads on this forum, but there is non, besides antiretrovirals (TAF, TDF, entecavir) and there is a good chance that we will not see a cure (( I don’t know what to tell you to make you feel better, I hope that you have a good support system and the meaning in life. This helps a lot. There is also God, some people experience a seroconversion, which is spontaneous functional cure, but it’s very rare. Tho still possible.

Damn, the reality of this is so hard but I’ll try to fight on. A work colleague of mine and I did the screening test together and he came out negative. He’s schedule for his last vaccine tomorrow I’m worried if it won’t raised suspicion if he don’t see me going for the vaccine. We also had a few bottles of beer together in the past but I have started ducking going places with him that involves alcohol. I’m so stress about this situation I’m thinking about staying away from work tomorrow to avoid such suspicion what could you advice on this situation?

You say yours negative as well and your doctor took a test and says you have antibodies against it that you don’t have to get a shot. Also try to avoid conversations about that. Move on. You can skip work if this makes to feel better. Btw work for me is the only thing that keeps me alive.

Thanks, if you don’t mind me asking how long have you been aware of your status?

Disclosing CHB in Casual Relationships - #38 by Fckhbvstigma This is my story.

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Hi @Acool,
You don’t have to share your status with anyone you don’t want to. Your friend has not asked you about anything, yet you are already thinking of avoiding him and work, that is self-stigmatization. You are assuming he or she will stigmatize you, but that might not be the case. If anything, avoiding this person will lead to them being even suspicious. You don’t have to hide from the world because you have HBV. Enjoy your life. Our experiences are going to be different so don’t let someone else’s experience influence what you do. Do what is right for your situation. I have known about my status since 2014, so I have some years under my belt as a fellow patient.

Concerning drinking, you can hang out without having to drink any alcoholic beverages. You can have water or a soft drink while the other person enjoys his/hers. The important thing is that you are there for companionship, the drinking is just a bonus. If anything at all we need to be around people and strengthen our connections. You will need all the support in the world as you navigate through this journey. Don’t shut those doors down. Remain positive, for negativity destroys lives and can kill. Best, Bansah1

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Thank you so much @Bansah1

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I lost my father a week ago due to this badly HBV. He was 58 year old. He have hep b since 2012 but taken antiviral entecavir from Jan 2021 after diagnosis liver cerrohisis. Then after his condition is overall good and stable till November 2024, weight gain from 52 to 83 kg. But in December 2024 suddenly heavy pain in liver upper and back side, weight loss from 80 to 60 kg and diagnosis advance stage Liver cancer HCC tumor in portal vein thrombosis and also obstructive jaundice. I told doctor why suddenly this happen, all over condition is good of my father till November 24 and all blood report and USG are normal, why this is happen immediately. Doctor told me that HBV return and active heavily in your father body and all this happen due to HBV only. After diagnosis HCC PVTT on 21.12.24 my father live only 1.10 month and died on 4th Feb 25. I and my doctor try best for reduce jaundice put up 3 stent in liver portal vein but jaundice reduce very slowly and I lost my father. I feel very bad that I couldn’t save my father life.
So, today I told u all, I lost my father due this HBV, but please do check up regularly and check condition of your liver and taken antiviral treatment regularly. God knows how this HBV can worse your healthy liver. Please be safe :pray::broken_heart::pensive:

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I’m so sorry for your lost Jigar. Sorry to ask but was he regularly having his routine visit to the hospital?

Dear @Jigar2808, I’m sorry for your loss. My dad passed away when I was 21, but he was drinking alcohol and developed cirrhosis, he was 57.
Story of your dad proves to me (speaking for myself here) that antivirals actually play very little role in prevention HCC and other coinciding diseases. It’s just matter of time I guess, when body is getting old it looses it’s resistance and then virus can kick in. To sum up, chances to die from it is 90% for all who are positive. It’s bad enough to live with the stigma but to know your predetermined cause of death which is delayed for 10-15 years this is another level…

@Acool
Yes, after Jan 2021 visit hospital 3 months regularly and all blood report and USG normal in that time.

Hi @Jigar2808,
I am so sorry for your loss. Please, take some time to grieve and take care of yourself. It is never easy to lose a loved one let alone when their passing is sudden. I understand you are hurting, angry, and surprised by how quickly this happened, hopefully, you have some support as you try and process what has happened to your father. You will need it trust me.

That is why we always encourage HBV patients to remain in care even when they are not in treatment but some people take it as a burden or a joke. HBV can change without warning, making it a very complex virus. I hope we can get to a point where we treat anyone that wants to be treated. The earlier someone is treated after their diagnosis the better their chances against liver cirrhosis and HCC. So far only China has this policy. By changing policies we are more likely to save more lives. We should not be losing people to HBV in 2025, period.

Once again my thoughts and prayers are with you and your family. Let us know how we can help. Some of us have been through this before and we can provide some support (listening). Bansah1

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There might be no hope for us since we are all likely to be condemned to the same fate. It’s sad living and knowing what might kill you.

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I’m sorry for your loss and I wish you the best

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Thank you very much for kind support. In this HBV Liver disease, treatment is very expensive. I lost my money also, so I request to kindly be alert for HBV. HBV destroy your physical health, mentally and financially. I humbly request to this community, if this community helps with any financially support to members, it will be the best for family who lost his loved one in this deadly HBV.

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So sorry to hear about your loss, @Jigar2808. Please take the time to take care of yourself and, if you are able, support the ones around you too. I hope talking about it here helps a bit for you to feel less alone.

Just to clarify here, studies have shown that antiviral treatment (when provided as per guidelines) reduces liver cancer rates by ~80%. People with Hep B can live long and normal lives, it definitely is not 90% for all who are positive.

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