I’m 36 years old and have lived with hepatitis B for 34 years. There are two possible ways I could have been infected. When I was two, we lived in an old, mouldy building. A company sprayed it, but the chemicals were too strong, and my whole family ended up in the hospital.

This was Poland in 1989 – the final year of communism – and the hospital didn’t use single-use needles. Then a year later my mum was working in the hospital and got infected with hepatitis B in the laboratory. When they checked the family, they found I had it too.

When I was a bit older I remember my mum telling me I had a sick liver and would need a blood test every six months, but to not worry. I didn’t, because they gave me chocolates after they’d taken my blood, so I was always quite excited to go! In 2011 I had a biopsy where my score was between F1 and F2, which meant slight inflammation and damage, although my blood tests afterwards were good which the doctors thought was slightly strange.

In 2013 I moved to the UK and continued having a blood test every six months. The results were always good, but since 2024 my viral load has been going up and down. One time it was 5,000, the next it was barely detectable. As a result, I had blood tests every three months and another biopsy – and the score was F0. My doctors said the virus sleeps for a bit then wakes up and it’s affecting my immune system. They wanted to put me on antivirals, but I was terrified because I’m an only parent and sole breadwinner. I started spiralling about losing my job and struggling to pay my bills. Now, in 2025, my viral load is high again, and they don’t want to wait any longer. I feel ready to go through with it—I feel like I need to prioritise my health first.

Immune system

I try to help my liver by having a healthy diet and not drinking or smoking. However, quite often I feel really tired without reason and have muscle ache and sometime feel pressure where my liver is. My immune system is working harder than in a normal person and I catch everything around, I had Covid three times and flu a couple of times despite the fact I’ve had the jabs.

There’s a lot of stigma around hepatitis B. Many people don’t know what it is or think it’s only to do with sexual contact or it’s the same as HIV. It’s upsetting and frustrating to have to keep explaining it. It’s 2025 and people should know what it is by now. Romantic relationships can also be difficult because hepatitis sounds so scary. Luckily my ex-husband was quite understanding, but I haven’t dated anyone for five years. I’m focusing on my child and work and I’m good with that.

Talking about illness is really stressful—not just hepatitis B—because people fear being judged or misunderstood. And finding a job can be difficult if you’re not 100% well

I would like to see more understanding, especially around applying for work. It’s a kind of stigma to be told you can do everything you want, but on the other hand… When I was 16, I really wanted to be a doctor, but thought I couldn’t apply and only found out that wasn’t true much later on. Talking about illness is really stressful—not just hepatitis B—because people fear being judged or misunderstood. And finding a job can be difficult if you’re not 100% well. When I applied to be a higher-level teaching assistant a couple of years ago, I had to answer health-related questions, including about hepatitis B. I tried to be as honest as possible, but felt uncomfortable having to explain my story to an interviewer. I was told I might be offered the role if I was in a stable condition but would have to let them know if anything changed. They did take me on and the people are lovely, and I’m now training to be a primary school teacher, but my fear is that a future employer could worry about me becoming unwell and hire someone without any issues instead.

There are a lot of opinions about vaccines too. My son was vaccinated immediately after birth and I believe vaccines are really important and protect us, but some people look at me like I’m from Mars when I say that.

It’s not an easy life. I’ve recently been diagnosed with PTSD, anxiety and depression and found the British Liver Trust by Googling when I was having a really bad day. I was crying a lot because I was worried about what would happen to my son if I was really unwell, because my parents are in their 70s and wouldn’t be able to come to the UK. I just needed someone to talk to and sent the Trust an email. They invited me to join the support group. It really helped, and it’s good to know the nurse-led helpline is there too if I ever need to talk to someone. I will also be starting therapy soon, so fingers crossed I’m on the right track.

Hepatitis B – Breaking the Silence

When the British Liver Trust asked me to be part of their Breaking the Silence report on Hepatitis B I agreed because it’s really important for people to know about the virus. A dear friend of mine didn’t know they had it and recently passed away from liver cancer.  It was very upsetting and made me realise that could have been me in 10-15 years, if I hadn’t been diagnosed and monitored.

The Trust also invited me to share my experience at the launch of the report in Westminster in December 2024. There were MPs there, as well as professors and doctors and they talked about the latest discoveries that will be great for hepatitis B. I was then introduced and made my speech. The room was silent as I spoke and people were nodding their heads. I think it made them think about life and illness and what we can do to help others. They said it was even better than hearing about scientific discoveries because my speech was really personal. I really felt I made a difference and that felt so good.

If you are diagnosed with hepatitis B, listen to your doctors and stay calm. You will be ok. You can live with your liver like that until you are 100. I say this to people who are newly diagnosed and really, really scared and feel like their world is shutting down. It’s really not that bad and I am the example of that because I’ve been living with this virus for 34 years.

If you’re having a bad day and need to lie down, then lie down – your liver really likes it when you rest. If someone wants to disturb you when you’re lying down, tell them you’re doing it for your liver. Try to be happy and laugh a lot, because it will help you and your liver too.

The post Roza’s story: “There’s a lot of stigma around hepatitis B. Many people think it’s only to do with sexual contact or it’s the same as HIV.” appeared first on British Liver Trust.

I’d never heard of hepatitis B until I was diagnosed and it was a really, really dark time for me. What worries me is that so many other people are stuck in that darkness too.

I’m 65 and an ex-teacher. I was diagnosed with Crohn’s Disease in the autumn of 2019 and had extensive blood tests so doctors could decide which medication to put me on. I don’t think I’d had any symptoms before then apart from occasional pain on and off over the years, which I suppose could possibly have been my liver. I kept going back to the doctors and they did a scan of my gallbladder, but it was fine so they didn’t investigate any further. It had stopped before the Crohn’s diagnosis.

Three or four days before Christmas 2019 I received a phone call from a hepatology nurse who told me the Crohn’s blood tests had flagged up that I had hepatitis B. I thought it was something to do with dirty water, but every single search engine came up with drug addicts and unprotected sex, so I kept thinking it must be a mistake. Christmas was ruined and I cried the whole time.  I also thought why not wait to tell me until after Christmas, as Christmas was ruined for all the family. I understand now why it was important to tell me as soon as possible, what would have happened if I didn’t know and had cut myself cooking and someone had helped bandage me up and I passed it on. It doesn’t bear thinking about. It would also have been unethical to withhold the knowledge.

I had my first hepatology appointment in the first week in January and was expecting to go in and be told they’d got the diagnosis wrong, but of course they hadn’t. The nurse I saw was lovely and I feel lucky to be in the care of such a good team. We went through my records to see if I had been tested for it when I had my two children and when I could have got it. I think it was probably through a cut I received some years ago.

Hepatitis B could have done a lot of damage to my liver

I was told I would have a fibroscan and an ultrasound scan. The results came back as normal. Doctors changed the medication they were going to put me on for my Crohn’s because it could have had an adverse effect on my liver and I was also put on antiviral medication to reduce the hepatitis B viral load.

Every scan I’ve had since had has been in normal range and the medication is keeping the virus level down to undetectable. I thank God that I was diagnosed with Crohn’s because through that I discovered my hep B. I feel so lucky and privileged that the tablets are working, because the hep B could have done a lot of damage to my liver. I shudder to think that I could have gone through life without knowing it.

When I was first diagnosed I felt full of shame. I did tell some people – I ran a type of food bank and felt obliged to tell the volunteers. I also told some very close friends I thought I could trust. I was terrified of anyone else finding out and looking it up on the internet and thinking “Ooh, what’s she been doing?”.

I didn’t go to the dentist for two years after I was diagnosed, partly because of Covid, but also because I didn’t want to fill in that medical form. It was bad enough putting Crohn’s on it without hep B as well. He’d been my dentist for donkey’s years – what would he think! but in the end I had to go and he was fine.

There was one person I feared speaking to about it, but one day I decided to be brave because if I could tell them I can tell anyone. It felt very empowering. They used to work in a hospital and they said: “Oh, that’s nothing. Loads of people come into hospital with hepatitis B!”

I’ve now accepted the diagnosis and am determined to shine a light on it. It was a gradual process – I thought do I stay here in my cave for the rest of my life, or do I do something about it that will help others? That drove me more than anything. Most people I tell say “I’m terribly sorry, poor you” so I’m not getting the stigma that I thought I would. I used to think that everyone I told went home and Googled it – they’re not because they’ve got too many other things to worry about and within a couple of minutes they have forgotten about me anyway.

Of course there is stigma out there and that needs to be challenged, if it is not it will persist but my personal experience is that most people are too busy with their own lives. I would say to anyone who does stigmatise me that no one has any right to judge other people, it can happen to anyone and you’re very, very lucky that it’s not you. The best way to challenge stigma is through education – so many myths exist out there.

I didn’t know I had hepatitis B and was symptom free

Hepatitis B can affect anyone and more than anything I want people to get tested. If I didn’t know I had it and was symptom free, how many more people are out there as a walking time bomb? I would also tell people not to self-stigmatise and to talk about it. It is therapy, in a way, and very empowering.

If anyone had told me that within two years I would be telling my story, I would never have believed them, but at 65 I just don’t care what anyone thinks anymore. I’m also a Christian and part of me thinks God has put me in this situation to make a difference. There are so many people who are pushed to the edge of society and I’ve always felt my calling was to help them.

I have been so lucky to have a husband and children who have loved and supported me every step of the way and cheer me on from the sidelines.

Because of my Crohn’s and Hep B I’m doubly vulnerable for Covid so I don’t really go out very much as I am immunosuppressed. I do find that there is stigma in this. People do not understand that I have to be so careful when mixing with others, there is little understanding or empathy and I often feel that people assume that I don’t mix because I am being awkward.

I joined the British Liver Trust’s online hep B support group

Having Hep B is so lonely and I had no idea of how many other people have it. I wanted to reach out to other people like me so I joined the British Liver Trust’s online hep B support group. It’s nice to talk to other people with it.

We have a monthly meeting and Kenny, who runs the group, will tell us about anything new in the pipeline and suddenly there are so many exciting developments on the way for a condition that has so often been overlooked, nationally and worldwide. It’s good to talk to other people in the same situation, you feel like you’re not the only one in the world with hep B and somebody else understands. I think this support group was instrumental in moving my life on and to tell my story.

I’m desperate to make a difference in any way I can and can talk for England on hepatitis B, I’m just so passionate about it. I’ve become a member of the Community Advisory Board of the Hepatitis B Foundation which is a huge worldwide organization based in America. I’m a representative for Europe. Patients across the world input the patient’s perspective with pharmaceutical companies to help design clinical drugs trials.

Through Kenny I’ve also contributed my experience to an article about stigma in a scientific journal and will also be part of a webinar for the British Liver Trust which will be going out on March 9^th (2023) I’ve also told my story as a patient advocate in a webinar for the Crick Institute.

Anything I can do to help people with hep B, I’ll grab with both hands because I just want to be that light that shines on it. I believe we all need to share our stories and the more I talk about it the more I feel it needs to be talked about and normalised. Otherwise, how will the perception of it ever change?

The post Amanda’s story: “Hepatitis B needs to be talked about and normalised. Otherwise, how will the perception of it ever change?” appeared first on British Liver Trust.

I discovered I had hepatitis B when I went to donate blood. I hadn’t had any symptoms, the only thing I’d felt was a bit tired, which I thought was because of my job. I was in hospitality and the schedule was quite mad and it was really hectic – I mostly worked till two or three in the morning.

I wasn’t given any treatment at first, I was told the viral load was so low that there was no need. But after a follow-up appointment around six months later I was also diagnosed with hepatitis D and cirrhosis. I was told the cirrhosis had mostly been caused by the hepatitis D, the hepatitis B probably wouldn’t have been able to make such a big impact on the liver. The cirrhosis was at an early stage so they would try to keep my liver for as long as possible and recommended that I take Interferon because that would stop the hepatitis B and D from continuing to attack the liver. At this stage my liver was still functioning.

This was a big shock because I’d been told people who have this infection with Hepatitis B, can have a normal life for a long time. They doctors had explained that the very worst-case scenario might be a liver transplant, but that I was very, very far away from that because the viral load was so low.

So I took the Interferon for about a year and a half. It was all right but there were side effects. Some people get depression, but for me it was mostly anxiety and mood changes. I was irritable – everything would annoy me and I had to try really hard not be rude to people, especially at work. The hair loss was the worst – I used to have beautiful hair and after the Interferon I felt like I only had a few hairs left. It’s been years since I stopped the treatment and my hair still hasn’t regenerated. Apart from that there was also some tiredness, but my doctor said that was most likely the cirrhosis.

The liver transplant was no longer a last resort and very far away

Then when I went back home to Romania on holiday I developed complications and ended up in the ER. I woke up one morning and had very big swelling around my eye lids, legs and abdomen. It was very painful. The doctor said I had ascites and needed to stop the Interferon because it wasn’t doing any good and was actually causing more damage. I was given some diuretics to get rid of the fluid and asked if I was on the liver transplant list because my liver was really damaged and the sooner I got a transplant the better. It was no longer a last resort and very far away as I had been told before.  They said I should speak to my doctor when I got back to London.

So I went back to the hospital where I was being treated with the Interferon. They looked at the blood test and agreed about the liver transplant and referred me to King’s College. I asked them if it was because of the Interferon and they said no. Maybe it was the Interferon though because after a couple of weeks without it, my liver was looking much better and regenerating a bit.

I remember crying when the doctor at King’s College spoke to me, but he explained everything very well which was really helpful. He managed to reassure me and told me that everything was going to be OK and that he would look after me. There would be a liver transplant, but the plan would be to delay it as much as possible maybe even for four years. I was on the list for a year and in 2022 I had the transplant. It was really hard because no matter how much you try to stay positive your mind still goes to the worst-case scenario.

I had the option to be matched with a living donor, so the plan was that if they couldn’t find a match for me they would have used my brother’s liver, but you never know what could have happened there. They said they didn’t want to do that unless it was really needed.

I tried to manage as much as possible so left my job in hospitality, got a day job and watched what I ate. I was told drinking alcohol wasn’t a problem because I’d only ever drunk socially, but I gave it up.

My health was all right while I was on the list, I was having blood tests and they were stable, so I just got on with life, but in the last two months before the transplant, my health got worse. King’s College called me to say there was a potential match, but unfortunately there was a problem with the donor liver and they couldn’t use it. While I was at the hospital, they did a blood test which showed that my sodium level was dangerously low so they kept me in. I was discharged after a couple of weeks, but two days later I got bad swelling in my legs and belly so had to go back to hospital and I stayed there for two weeks until I got the transplant.

I was scared, it’s hard for the patient when you have such a bad disease, and for the family too, they were more concerned than I was.

You know the donor liver isn’t coming from God, but a person who won’t be there any more for their family

When I was told there was a liver that was a match for me, on the one hand I was glad because my health was bad, but at the same time you know that the liver isn’t coming from God, or a living donor, it’s coming from a person who won’t be there any more for their family. It’s hard to be happy about it, it’s more survivor guilt.

The surgeon explained what was going to happen and all the things they needed to do before the surgery such as an X-ray, ECG and blood test and then the lead surgeon came and introduced himself and explained the surgery. He was very professional but also at the same time very helpful and explained it all very well, so when I went into surgery I wasn’t scared at all. He told me he’d been doing this surgery for many, many years and he’d always been successful and that, apart from my liver, I was comparatively healthy and didn’t have any other problems.

So I had the transplant on 7^th August and thought I would wake up the same evening, but I woke up the next day around 2pm. They extubated me which was a bit uncomfortable and asked me how I was feeling. I was Ok, there was a bit of pain which I was expecting. I stayed in the ICU for a day and then they moved me to another ICU and then onto the ward. I didn’t have any complications from the surgery. All that I had was a bit of fever on the fourth or fifth day, so they did all the checks and put me on antibiotics and I was all right.

They discharged me on 20^th August and at the moment I’m feeling OK. I’m able to walk but not exercise hard, so I go for a walk every evening and try to rest as much as possible.

I was working remotely as a customer service adviser on a three-month contact when I was on the transplant list. They were fairly ok about it, but I’d only been working there for three weeks before I went into hospital so they couldn’t extend my contract, but said I could come back when I was feeling better. I’m now self-employed as a Romanian/English interpreter.

Liver disease can take a toll on your physical and mental health

I would say to anyone in a similar situation to keep fighting, stay positive and always have something to focus on. That’s why I kept on working. I needed to but, on the other hand, if I’d stopped working it would have been even harder because everything would have been about the disease. It’s hard but you will get to the other side.

Also I would advise people to always reach out to someone and talk about the emotions and feelings that they have, it doesn’t have to be their spouse it can be a close friend or a college or even better a professional counsellor. I know it can sometimes be overwhelming and a person that fights a disease like this can go through many different emotions, from anger, to fear or other changes in mood.

This disease like any other can take a toll not only on your physical health but also on your mental health, so please discuss with your medical team ways to cope with it. This country’s health system has many options available, such as support groups or counselling services.

I want to write a letter to the family of the donor, but it’s so hard to find the words…

The post Loredana’s story: “Liver disease can sometimes be overwhelming and you go through so many different emotions” appeared first on British Liver Trust.

The post Monica’s story: “I was unbelievably lucky because my liver disease was picked up so early” appeared first on British Liver Trust.

The earlier the diagnosis, the better.

“In the 1970s both of my parents had the virus hepatitis B. It can be passed from mother to baby, so when I was born I was tested for it and given the all clear.

“Throughout childhood I often had colds and flu-like symptoms. Sometimes I was accused of making it up but, looking back, this could have been a sign that something more serious was going on.

“In 2018 I had pain in my abdomen. Initially my doctor thought it might have been gallstones but tests showed nothing there. Two weeks later, I was still in pain. I went to see a locum doctor who sent me for more blood tests. The tests showed I had hepatitis B with a very high viral load.

Decompensated cirrhosis

“I was sent for a Fibroscan and a liver biopsy. I was given medication to take but this me vomit and gave me nose bleeds. Six weeks later I was taken off the medication and was diagnosed with decompensated cirrhosis – the damage to my liver had progressed so far that it was starting to fail. By that point I was also experiencing hepatic encephalopathy and started to lose my memory. I was so ill with it I had to take three months off work.

“Two years later and I’m under the care of King’s College Hospital which is brilliant. I’m on about ten different meds a day but fortunately my liver function is starting to stabilise. In the future I’ll probably need a liver transplant but for now I’m okay.

“I’ll never know why I was given the all clear as a baby. There is still some stigma around viral hepatitis but it’s really important to get tested if you’re at risk – as my experience shows, the earlier the diagnosis, the better.

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