INTRODUCTION THREAD: People affected by Hep B

Hep B community was specifically set up to connect people affected by Hepatitis B with one another and trustworthy experts.

Use this thread to say “hi” to the community and introduce yourself to others with a little bit of information about yourself (e.g. country you live in, how Hep B has affected your life, etc.).

TT

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Hi all,

My name is Thomas Tu and I’m the founder of Hep B Community. I am from Australia and have lived with Hepatitis B for my entire life as far as I know.

I decided to start this community up because I found it really hard to discuss Hep B with anyone (outside of my family) because of the stigma and silence around it. In the last years, I saw more people standing up publicly about their status: most prominently @Suwang88 (see here and here) and Joan Block.

Last year, I decided to join them in publicly acknowledging my HBV status because it was just so freeing to know there were others out there with HBV and I wanted to inspire that feeling of acceptance in anyone else out there who needs it.

I started this online forum as an extension of that feeling and hope it can help others feel that liberation.

TT

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Hi guys! I’m from South Australia. I’m a chronic Hep B carrier and as far as I know, was born with it. I’ve chosen to remain silent about my condition (apart from family and medical professionals) because of the perceived stigma. This forum is a great idea!

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Hi Melodia,

Welcome to Hep B community! Thanks for sharing your story and the kind words.

I’m hoping that this forum goes a little way in trying to normalise HBV infections and dispel the surrounding stigma.

Cheers,
TT

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Hello! My name is Olga and I am from Russia. I have Hep B since I was nine years old and now I am 43.
Two and a half years ago I stated therapy with Baraclude and last month it became clear that resistance has developed. Two weeks ago I started Viread and now I have worries what if tenofovir resistance will also develop.
I am glad to find community here and hope for sharing useful information, life experience, what people do around the world to keep liver healthy (may be yoga, diet, anything else). Cheers

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Dear Olga,

Welcome to the forum! Glad that you decided to join this growing community.

Thanks for sharing your story. As far as I am aware, tenofovir resistance is very uncommon with only 1 or 2 cases being reported worldwide (@MarkDouglas knows more about this, he’s an Infectious Disease specialist with a strong background in antiviral resistance).

Of course, it’s important to keep monitoring and getting regular blood tests though.

TT

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Hello all,

My name is Paul and I was born with HBV. I live in the U.S. but was born in South Korea.

Even though I was born with HBV, it didn’t rear it’s ugly head until my late 30’s. I was diagnosed with cirrhosis in 2016 and started Vemlidy in 2017.

I have had many new ailments after starting Vemlidy in 2017 and encourage everyone to start treatment at the earliest possible stage that your liver specialist recommends. I can only assume I am dealing with so many new medical issues because I waited too long to start treatment.

I am finally getting a new hepatologist this month as my previous one was not very informative or helpful. I am constantly learning new things about HBV through online resources, the hblist and now hepbconnect. Hopefully, my new hepatologist will shed light on my particular situation because I have had this disease all my life and have been going to specialists for over 15 years and have learned that many sufferers have a lot more knowledge about the terminology and test results even though they aren’t at the cirrhosis stage yet.

I would like to thank Thomas for his contributions on the hblist and creating this new site with forums and message boards and private messaging, etc. It is always beneficial to have any resource for HBV and I look forward to what hepbconnect will offer.

P.S. - A note to Thomas: As you know, many HBV sufferers are hesitant to speak up. It took me many months of being on the hblist before I would contribute. Keep this in mind as you endeavor to provide this service to us. Hopefully enough people will start posting so that others will follow suit. It may take time, but keep at it, because even us quiet ones in the background need you.

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Thanks Paul for your kind words and sharing your story.

I am glad you found your confidence in choosing a new hepatologist that you feel more comfortable with. I felt like many times I went along with things, just because a GP told me that this doctor was the person to go to rather than understanding what I wanted.

I’m also happy that you are empowered enough to speak up on hblist and now in this community and grateful that you are sharing your experience. As you say, it helps the quite ones in the background. I hope that together (with the others on this forum) we can build something that will help a lot of people get through life.

TT

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Dear Thomas,

Thanks for organizing this forum. Your bravery is am inspiration to all of us. I am hoping that we can continue to express ourselves and help find solutions to our collective problems.
I have just been diagnosed with a less than 10 hbv DNA and is expected to meet my doctor end of month for advice.
Wishing us all well in our collective search for answer.
Hope we find courage in our discussions.
Thanks.

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Dear Pat,

Thanks for the kind words. I do not really feel brave, I am just privileged enough to be in a situation where I will not experience much discrimination for publicly announcing my status. I hope that all together we can build a world where everyone can live like this.

I hope all works out well with your recent diagnosis and know that there is a group of people here going through it with you!

TT

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Hi everyone,

I am from Nigeria and my husband was recently diagnosed with chronic Hepatitis B and the news was devastating for us. My heart was literarily in my mouth while I was waiting for my own 3-panel test result in order to know my status. Thankfully I am negative but we haven’t test our children yet. I joined this forum in order to understand Hep B, find information that will calm my nerves and enable me to offer support to my husband as he’s trying to deal with the reality of Hep B: diet restriction, daily medication (He’s currently on Tenofovir DSF 300mg and Livolin tabs) etc.
I have encouraged him to join the forum but he’s not yet out of the woods emotionally.

Thanks Thomas and all the team at HEPBCONNECT for starting this forum and volunteering your time.

Cheers

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Thanks for the kind words and for sharing your experiences. Welcome to the forum!

I’m happy that you are in good health and that your husband is already on medication and being clinically monitored. Please let him know there is a community here that understands what he’s going through in terms of the emotional impact of being diagnosed.

TT

Many Thanks Thomas for your response. You’re doing a wonderful work.
I’m currently convincing my husband to join your community; I have printed tons of resources for him from your site and hopefully he will register soon.

Best regard,

174

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A post was merged into an existing topic: Upcoming HBV treatments

Hi all, my name is Miriam and I am from Sydney, Australia. I am the partner of someone who lives with hep B, so I guess I am part of the affected community, although I am negative for hep B myself.

It has taken me a long time to understand the full impact of hepatitis B on my partner. I think when I first met him, I didn’t know much about hep B and it wasn’t a big deal for me that he was hep B positive. So it took me a while to understand everything he was going through.

I am also a student of public health and a moderator on this forum. Looking forward to interacting with all of you!

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Thanks for joining the conversation, Miriam!

I think it can be hard for people with HBV to know how much it affects them themselves, so I guess it’s even harder as someone on the outside (particularly when it can be such an emotional and sensitive subject).

Welcome to the forum and glad to have your perspective on the discussions here.

TT

Hi everyone
My name is nancy and I was diagonised last week …I do not know how long I have had it …All I wish Is for a cure to be discovered

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Hi Nancy,

Welcome to our community and well done for taking the brave steps to discuss your status with us. Many of us have been in the same position as you are now; you are not alone!

Regarding the cure, hundreds of very smart and hard-working scientists around the world are working on it. There is still work to be done, of course, but we’re closer than we have been before and your hope is in the process of becoming reality!

Thomas

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Just found this website off of a mailing list. I found out I had CHB about 4 years ago. I m the only one in my family with it ( older brother and mother). Guessing I got it as a kid, maybe in the hospital back in Korea after an accident or maybe through a dentist or dr. Back in the 80s medical facility I was in were not clean. They probably reused needles to save money or something anyways it’s water under the bridge. Just glad my kids don’t have it and wife does not either.

I have good day ll and bad days. Some days I feel like I m afraid of dying from HCC, some other days, I m scared to go on treatment for life and my body rejecting the medication or medication not working anymore. Other days, I don’t even think about it. Recently for some reason, I been in a negative down spiral mentally because of my CHB.

Outside my family, none of my friends know. And I don’t know if I ll ever say I have hepatitis b to them. I m glad I found another outlet for my hepb. I m pretty much alone on this, except my mom.

No treatment so far and hoping to stay that way, god willing. Hopefully I ll be inactive carrier forever.

Thank you all for sharing your stories!

I live in the U.S.

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2 posts were merged into an existing topic: Deciding when to start treatment