What if our symptoms were underestimated?

Living With Hep B Lifestyle
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Hello,

My name is Bérénice
I wanted to thank @ThomasTu for this wonderful group
I live in Paris and have been a hepatitis carrier since childhood. I was adopted from Burkina and it was upon arriving at the age of 5 that this illness was discovered in me. It has been inactive for years and I live without treatment. Now, I want to dance with it instead of confronting it, because I understood that I was also confronting and hating myself.
And I’ve been living quite well with it for a few months now, with less psychological pressure and pain. I wondered if it was thanks to the intermittent fasting I was doing. It’s a topic to explore.

I am 33 years old and for almost a year, I have been part of SOS HEPATITE, a French association in decline due to lack of financial resources. We are the beggars of health.
By being part of this association, I have become an expert patient and I reach out to newly diagnosed patients to help them, through my experience, to live with this virus that has become one with their bodies.
I have heard heartbreaking testimonies from people who wanted to take their own lives, who wanted to withdraw from society and stop loving to avoid contaminating others.
I have also gone through these phases and I would like no one else to cope with the illness in this way, because we are not pariahs.

Today, I replied to an email from a hépatant (that’s what I call us).
He shared his pain with me and the lack of consideration from doctors regarding it.
I replied to him that I had been in his situation, undergoing a battery of tests only to be told that my body was fine despite the pain, the chronic and dull fatigue, sometimes morning paralysis, and the stiffening of my limbs at the slightest cold.
I wonder if we, as patients, couldn’t set up an application to list all our ailments and use them to advocate for our care. I had asked my doctor for a cure, but nothing is available.

I would appreciate your feedback, and if there are any French people in this group, please contact me. I would like to organise meetings and put pressure on the State to take responsibility for this endemic illness.

Thank you and strength to us all.

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Hello,

I am also French and I have contacted sos hepatites several times.

I discovered my hepatitis B in 2010 during my pregnancy; I had a viral load of 8000 IU and an HBs antigen of approximately 50,000 IU. In 2019, the hepatologist put me on entecavir because the FibroScan was at 7 kPa and I had various symptoms (fatigue, irritable bowel, muscle pain and stiffness, neuropathic pain, tinnitus, insomnia…). Today my DNA is undetectable but my HBs antigen does not decrease and remains around 50,000 IU. I am followed in a pain management centre which tells me that I have developed secondary fibromyalgia linked to hepatitis. They explained to me that my virus has disrupted my immune and nervous systems. 30% of hepatitis patients would have fibromyalgia.
This is my experience.

Have a good day.
Marie

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Thank you very much for sharing your story
I’m sorry you discovered the illness during this beautiful stage of life.
Over time, have you learned how it affected you, or do you prefer not to know?
I hope your child has grown up well since then. :slight_smile:

I thought I would have a few more answers because it’s a real scourge and our lives sometimes struggle to be lived in peace because of these pains that often occur without warning.
All these pains you describe are also described by other patients. But to access care and be 100% recognised in the management, doctors dismiss the illness, even though acts like acupuncture and other similar treatments alleviate the pain.
This is the first time I’ve heard that 30% of liver patients have fibromyalgia. Was it your doctor who advised you to go to this centre? What you’re telling me is important because I can also give information to and direct other patients in your situation. I think I’ll make an appointment.

I don’t know if you’re in Paris, but as I said, I’d like to organise meetings. I’ve recently been in contact with Hôtel-Dieu and I’d like to set things up, to change how our care is managed.

Looking forward to hearing from you
Bérénice

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Hello,

I don’t know how I contracted it; my mother was seronegative. I’ve never used drugs, and I was vaccinated at 14, probably during childhood according to the hepatologist. I’ve had symptoms since the 2000s. I was diagnosed with hepatitis in 2010 and fibromyalgia in 2024. It was an internal medicine resident who had been following me for 5 years for various symptoms who diagnosed me and sent me to a pain management centre. For me, there were 10 and 20 years of diagnostic odyssey and suffering.
I am from Brittany.
The journey is difficult, and you have to fight for everything. Unfortunately, I won’t be able to benefit from the new upcoming treatments because I have a high HBs antigen.

I wish you courage.
Marie

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Dear @Victoire,

Thank you for your post and sharing your story. I can talk from personal experience it is difficult to maintain community advocacy groups. I have found networking and making sure you are surrounded with people in good, positive, engaged energy is really important to survive and thrive.

I can try to put you in contact with my Parisian colleagues who do research and clinical work in the field if you think that would help. @mariondelphin would probably know more than I do: while she was based in Lyon, she would have also probably had some interactions with Paris too.

Thomas

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Hello everyone,

Thanks Thomas for flagging this thread to me!

Thank you so much for your testimonials — and apologies for the delay in responding, I really wanted to take the time to sit down and write to you.

I am currently based in London, but I am French and I did my thesis on HBV in Lyon. As Thomas mentioned, I know a few researchers in Lyon, but very few in Paris — or only by name, so I’m not sure I can be of much help in creating local connections.

That said, living in the United Kingdom has opened my eyes to how far behind France is in terms of recognising and integrating patients into care pathways. We treat the body seriously, but we often forget to listen, to acknowledge lived experience, and especially to actively involve the people concerned. People living with HBV should be fully integrated into research, education, and health policy initiatives — it’s not a luxury, it’s a necessity.

Aside from a few committed organisations like SOS Hépatites (and well done for your work with them, by the way), patient associations around HBV remain largely invisible and unsupported in France. Personally, during my thesis, I had never been put in contact with people living with HBV. I had never met them, never exchanged with them. Today, this interaction is at the heart of my work, and I sincerely wish every researcher had this opportunity. Internationally, organisations like the Hepatitis B Foundation or the World Hepatitis Alliance play a major role in making these voices heard and driving concrete changes. There is still much to build in France — and that’s why your initiatives are so important and inspiring.

If I can help from London, in one way or another — by sharing resources, contacts, or examples of initiatives seen here — it would be with great pleasure.

Have a great day everyone,
Marion

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Hello Victoire,

Welcome to the forum and thank you for joining us. Your testimony, as well as the messages you relay, are invaluable – thank you for sharing.

:fr: We can only encourage other French-speaking members of this forum to get in touch with you, and for those in France, to also invite them to support the organisation of these meetings and the various initiatives you mention.

As you rightly point out, support and kindness among patients are essential. I hope this forum can serve as a sounding board for these exchanges and surges of solidarity.

Thank you to everyone who has already replied to you.

Have a very good day everyone, :star2:

Marion

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Hi Marion,

Sorry for the late reply, but sometimes I like to disconnect from this site when I’m not feeling great. It reminds me that there is currently no solution to defeat this disease. It plunges me into the distress of patients and also brings me back to the observation that it’s a disease carried by a certain type of human being, Africans, Asians… and that in France, ultimately, what are 200,000 people sick with hepatitis out of 60 million inhabitants? Trivial, therefore of little concern for public health issues. July 28th was the day of action, and we heard so little about it, not a single poster, nothing. So what’s the point of fighting in vain!? I, too, barely dared to post things on my Instagram for fear of being asked if I was a carrier. I’m tired of holding my breath with this disease and everything else that doesn’t follow. Maybe I’m having a bad day, but there’s a reality here. As you say, we forget listening, lived experience, and that’s bad for the progression of the disease. Earlier, @Marie_David spoke about fibromyalgia. I mentioned it to my GP, who remains doubtful about this information. That to reduce all hepatitis pain, one must take treatment since it’s not new that it’s a disease that causes joint pain. I asked her if cures were being put in place, still as doubtful and without much enthusiasm, she tells me they are reserved for rheumatism and other diseases but that if I want, she can prescribe one for me. She constantly returns to this treatment that I don’t want to take. But alternative medicine is very underdeveloped. It’s up to the patient to manage. I go to my Chinese therapist, I get massages, but all that comes at a cost. But I know it does me good deep down. I’ve just walked a few days on the Camino de Santiago. I know it does my body good, my liver, and I thought very little about my disease. I would therefore like to set up therapeutic walks with young people so that they understand the need to have a healthy body, better psychology, and that they learn to listen to it. We can stay in touch, yes. I would like to hear back about your initiatives in London.

See you soon
Bérénice

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Hello @ThomasTu , thank you for your answer. Yes, very interesting for me to be in contact with other professionnals. I partcicipate at Institut Pasteur of an international journey for hepatit, maybe I meeting hem? :slight_smile:

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Hello Marion,

Yes, I took the liberty of sending this message to show members that France is represented and that there’s activity. If they’re feeling lost, they shouldn’t hesitate to contact SOS Hepatitis or talk to me on this forum. For the moment, I’ve only heard from Marie but I’m not losing hope. I don’t know how to give it more visibility. Sometimes, I’d like to shout so people can hear me through my keyboard hahaha.

Stay strong
Bérénice

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Hi Marie,

I hope you’re doing well and thank you for all this information.
There will indeed be a treatment for you, given the research being carried out. I was at the International Hepatitis Day and there are promising things underway, but nothing certain and everything takes a long time. Keep hope and grit your teeth. Also, falling in with the right people, as you have, with this intern.
Otherwise, I hope your child is in great shape.
Have a lovely summer.
Bérénice

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Hello,

Thank you for your feedback and the little hope you give me regarding future curative treatments. As they say, hope keeps us alive. In the meantime, I try to make the most of my time with my husband and my two children and to distance myself from people who don’t do me any good. I don’t shout from the rooftops that I’m ill, but my friends and family are informed. The occupational health doctor told me not to tell my colleagues that I have hepatitis; it’s this kind of comment that’s hurtful, but unfortunately, you have to live with it. I’m stepping back from how others view this illness, otherwise it ties my brain in knots. For my part, the older I get, the more I detach myself from what others think. I can do better, but I’m making progress. The hardest part for me remains the presumed symptoms of fibromyalgia (tinnitus, irritable bowel, fatigue, hypotension, insomnia, various pains…). I welcome any information and news you might have about hepatitis.

All the best.

Marie

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Dear @Victoire,

Let me connect with my colleagues at the next meeting and see if there is something I can organise.

Alternatively, if you have the time, you can also come to the HBV community forum being held in Berlin (accessible in person or virtually for free, 2025 Community Forum » International HBV Meeting). I will be there!

HepBCommunity.org is proud to be one of the endorsing partners too!

I’m also glad to hear about your walks along the Camino de Santiago. A sacred thing that I miss while working in Germany was the ability to walk along well-signed and beautiful trails - it was just so easy to access. I will have to make the effort here in Australia.

Thomas

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Hello Berenice,

Sorry for my late reply; the last few weeks have been very busy at work, and I preferred to wait until I had time to respond properly.

First of all, thank you for taking the time to write to me and share all of this with me — I know it’s not always easy to put words to these feelings, especially when going through moments of discouragement. What you express is so true and is shared by so many people living with hepatitis: the invisibility of hepatitis in public spaces, the lack of listening and recognition, the mental burden of living with the disease… all of this weighs heavily. Your feelings are legitimate, and there’s nothing “weak” about having these “bad days”. There is also real neglect of HBV, because these figures are similar to those of people living with HIV in France, and we hear much less (or not at all, as you said) about it!! I admit I’ve thought about it a lot and still don’t fully understand why, especially when I talk about it with people around me (the figures associated with the disease, its impact, the stigma experienced, etc.), they are extremely shocked by this silence.

I am truly touched by your idea of therapeutic walks. It’s a concrete and positive approach, connecting physical health, mental well-being, and awareness. It’s exactly the kind of initiative that can create connections and change perceptions, especially among young people! Perhaps Gilead or Roche would have funding to implement these initiatives? I know they try to promote the voices of people living with the virus (even if it often remains clumsy…) and have allocated money, but I don’t know at all how it works!

Thomas’s idea is good; I’ll see if I can find some Parisian colleagues at the HBV meeting in September and see if they are interested in getting more involved. I strongly recommend attending the community forum he mentioned; it’s often a very interesting time!

Take care of yourself, and continue to allow yourself moments like the Camino de Santiago — it’s inspiring to see that you find ways to breathe despite everything.

With all my friendship,
Marion

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Hello Marie,

I hope you had a good summer. I enjoy reading your messages because you’ve lived with this illness for several years, and even if it affects you, you don’t let it define you. This is the struggle for newly diagnosed patients: learning to live WITH it, not AGAINST it. Family also helps, as it’s a real foundation you have to cope with it. This afternoon, I’m attending the meeting that Thomas will be part of. I’m looking forward to it. I think he’ll be happy to share some information afterwards. Strength to US <3

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Hello Thomas,

I will be there too this afternoon and I can’t wait.

come to France to take the path. Last year I met a 20-year-old Australian in burnout. This year, a man from Carolina. It just takes time :slight_smile:

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Hi Marion,

Thanks for the ongoing communication.

I’ve noted Gilead and Roche; I’ll look into it with SOS. It would be really great to be able to get in touch with them and successfully carry out this therapeutic walks project.

As I mentioned to Thomas, I’ll be at this afternoon’s meeting, which I hope won’t be entirely in English. Otherwise, I’ll be a bit lost. But it’s certainly a privilege to be part of these moments, and it helps me grow in terms of my mindset.

Best regards,

Bérénice

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Dear @Victoire,

Great! I’m really looking forward to meeting you tomorrow at the session. This will be carried out mostly in English, but hopefully @mariondelphin can meet up with you also and have a chat.

Thomas

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Hi there!

Sorry for the delay, I’ve been offline these past few days! I’ll be there this afternoon, will you be there in person or via Zoom? Looking forward to meeting you,

Have a good day,

Marion

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Hello Thomas and @mariondelphin

I hope you are fine

I see you and would like to writte you but not possible to send private message. But I am here. My english is not very good but I think I understand. You do an article for explain this moment? It was very interesting. I remarked the despair of people. But you have lighting a lot. I would not take a pills but itseems necessary.

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