The video narrator reflects back on a significant event from his childhood when he was diagnosed with hepatitis b. Initially, the diagnosis led to isolation due to the prevalent misinformation and stigma associated with the disease. His family and he were confused by the lack of understanding and the widespread misconceptions surrounding hepatitis b, leading to unnecessary restrictions on his activities and interactions with others. However, he learns how the health care system's lack of comprehensive guidance often results in patients being lost to follow-up care, highlighting a systemic issue in handling such long-term conditions.

Over time, the narrator shares how a significant change in his understanding of hepatitis b came when he resumed regular health check-ups during his university years. With guidance from a new doctor, he began to comprehend the virus, dispel the myth associated with the disease, and learn about his condition through dedicated research and a career in biomedical sciences. He took part in clinical trials, understanding the importance of proper treatment and research in combating the disease.

Main takeaways from the video:

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Key Vocabularies and Common Phrases:

1. stag [stæɡ] - (n.) - A celebration held for a man shortly before he enters marriage, commonly known as a bachelor party. - Synonyms: (bachelor party, bachelor's night, pre-wedding party)

I just came back from my stag last week.

2. hepatitis b [ˌhepəˈtaɪtɪs biː] - (n.) - A viral infection that attacks the liver and can cause both acute and chronic disease. - Synonyms: (liver disease, viral hepatitis, HBV)

Then came the diagnosis. The doctor sat my parents down and said, you son has hepatitis b.

3. asymptomatic [ˌeɪsɪmptəˈmætɪk] - (adj.) - Presenting no symptoms of disease. - Synonyms: (symptomless, unapparent, subclinical)

as often the case with hepatitis b, the virus is generally asymptomatic, meaning there is no symptoms.

4. viral load [ˈvaɪrəl loʊd] - (n.) - The amount of virus in an infected person's blood. - Synonyms: (virus amount, virus level, viral concentration)

The treatment guidelines only recommend treating us if our viral load is high enough, which leaves many of us untreated.

5. seroconverted [ˈsɪərəʊkənˌvɜːtɪd] - (v.) - The process of developing detectable antibodies in the blood as a result of infection or immunization. - Synonyms: (antibody development, immune response, serological change)

After being on tenofovir for four years, she was recommended to come off it and she seroconverted, meaning her hepatitis b never came back.

6. stigma [ˈstɪɡmə] - (n.) - A mark of disgrace associated with a particular circumstance, quality, or person. - Synonyms: (shame, disgrace, dishonor)

hepatitis b, similar to all long term conditions, is surrounded by misinformation and stigma.

7. eradicate [ɪˈrædɪˌkeɪt] - (v.) - To destroy completely or to put an end to. - Synonyms: (eliminate, abolish, wipe out)

and an opportunity to finally eradicate this virus.

8. fibrosis [faɪˈbroʊsɪs] - (n.) - The thickening and scarring of connective tissue, usually as a result of injury. - Synonyms: (scarring, cicatrization, sclerotization)

I could have collapsed one day, walking to work, finding myself with stage 4 liver fibrosis or even liver cancer.

9. opt-out [ɒpt-aʊt] - (v.) - Choosing not to participate in something. - Synonyms: (decline, refuse, withdraw)

you'll be tested for hiv, hepatitis C and hepatitis b as of standard, and you can opt out if you wish.

10. healthcare analyst [ˈhɛlθˌkɛr ˈænəlɪst] - (n.) - A professional who examines and assesses information related to healthcare systems to improve the quality, safety, and efficiency. - Synonyms: (healthcare researcher, medical analyst, clinical analyst)

First as a healthcare analyst, analyzing clinical trials, having a wide amount of information accessible to me.

What you don't know about Hepatitis B - Supa Chantschool - TEDxNHS

Summer holidays. Remember those? Packing up your favorite toys to go on a journey with your family. It's been a busy one for me this year with work and prepping for my wedding next week. I just came back from my stag last week. My friends dressed me up as a golf ball and we've only had four opportunities to rehearse for our first dance. So fingers crossed.

But for the busy summers, sometimes I like to think back to the carefree days of just being a kid. I want to take you back to the summer of 1998. I was 8 years old and I was really excited to go on a family holiday. I don't remember where we were going. It could have been the Canary Islands for the beach or even Disneyland. My parents took me to get some travel vaccinations at our local GP surgery. You don't think twice about going to see the doctors at 8 years old, do you?

I just knew that I didn't like needles and the sharp scratch that came with it. But I did pretty well. I only cried once. Then came a second visit for some blood tests and then a third. And I started to wonder, why were we visiting the doctor so often? Was there something wrong with me? Then came the diagnosis. The doctor sat my parents down and said, you son has hepatitis b. How did you react to that? Shocked, fearful, concerned. It was no different for my parents.

hepatitis b, similar to all long term conditions, is surrounded by misinformation and stigma. My parents first thoughts were, how did I get it? Where did I get it from? What does this mean for my future? My parents. My parents used to hear stories of hepatitis b coming from blood clams. Delicacy from Asia, Small clam, pink meat, red haemoglobin, liquid inside. But I've never had blood clams. I had a lot of exotic foods as a kid, but not blood clams. The doctor told us that you can't get hepatitis b from food. So where did I get it from?

Hepatitis comes in five different A, B, C, D and E. All hepatitis types are all completely different from one another and they're all contracted in different ways. But all five types can damage your liver and can eventually deliver cancer. After the diagnosis, things changed fully feeling like the pandemic. Everyone who was in close contact with me had to get tested. My parents, my brother, my sister all got tested. And another visit to the gp, my mom found out that she was also positive for hepatitis b.

We don't talk about feelings in my family. And truthfully, to be honest, I don't know how she felt similar to other Asian families. We just shrug our shoulders and we keep moving forward. My mom was 28 years old at the time and I can imagine an immense feeling of guilt. Mother to child transmission is the most common way hepatitis b is spread. That's why my mother had it. That's why I have it. Of the three siblings, only I drew the short straw. Just pure chance.

I remember having a busy childhood. School Monday to Fridays, extra tuitions. Homework, extra homework, more extra homework. Karate on a Saturday morning and Thai Sunday school. But Saturday afternoons, those are mine. I was free to be a kid. After the diagnosis, there was a shift in how I was told to behave. Friends, birthday parties would start off with a warning from my parents. Remember, don't share food with the other kids. Don't play with the other kids. Toys, don't touch the other kids.

Imagine living life. Set easy mode one day and then thrown into hard mode the next. These restrictions, they weren't created for mine or the other kids safety. They were created from misinformation and fear. It made me feel isolated, different, misunderstood. What's most worrisome is that this misinformation came from our healthcare system. We were given wrong information because the virus was just so poorly understood at the time. And to be honest, the facts and the attitudes towards hepatitis b, it's not so different now.

I still hear horror stories from people living with hepatitis b. Refusing to touch their kids, eating separately from the family, and even avoiding social events altogether. People across different communities would hide their status out of fear of discrimination. And to be honest, can you blame them? Looking back, I felt like I had my guard up all the time. I would struggle to approach and talk to other people. I would be lost for words when someone new would come talk to me. I had friends, but I also spent a lot of time on my own. And I started to enjoy being on my own.

I also spent a lot of time in hospital. Not because I was unwell, as often the case with hepatitis b, the virus is generally asymptomatic, meaning there is no symptoms. But off I go to hospital for my regular blood tests. Anyway, the staff are friendly. Lots of kids playing with the various toys you'll find in a hospital waiting room in the 90s. But I was conditioned. I wouldn't approach the other kids. I wouldn't play with the toys. My blood was dangerous to other people.

I understand now that I built a wall around myself. The bricks were handed to me by the people around me. But it was I that built that wall of fear. I built my own prison cell. At 16 years old, the hospital appointment stopped. The letters stopped coming in. It didn't bother me. I had homework, exams. I was thinking of applying for university. But what I know now is that I was being transferred from pediatrics to adult care and I was lost in the system. I didn't know that. My parents didn't realize. Why would we have known that?

One of the most concerning things about people living with hepatitis b is that we're easily lost to care. The asymptomatic nature of the virus makes it easy for us to think that we're living normal lives. It makes it easy for us to prioritize and pursue other interests. The treatment guidelines only recommend treating us if our viral load is high enough, which leaves many of us untreated.

18 years old now, fresh face. Going to university, studying biomedical science at King's College London. I was trying to live a normal student life. Towards the end of my first year, I signed up for a volunteer trip to Honduras, and funnily enough, I needed some travel vaccinations. During the consultation, I mentioned that I had hepatitis b. The practitioner was a bit taken aback by this point. Now, it's been three years since I've last been in hospital, since the letters stopped coming in. But within a couple of weeks there I was back in hospital regularly for blood tests.

So let's pause there for a second. It took me disclosing my diagnosis at a routine vaccination to be noticed by the healthcare system that diagnosed me in the first place. And this is where things changed for a second time. I met my new doctor at hospital. We spoke about my degree, my ambitions, and of course, hepatitis b. He was straight up forward, tad bit cocky, but ultimately treated me like we were on the same level. He humbled me on my knowledge of hepatitis b, but also demystified some of the stigmas around it for me.

10 years. 10 years since being diagnosed, I was finally understanding more about this virus. He drove me to do some more studying and research on the virus. And when I graduated, I decided to pursue a career in life sciences. First as a healthcare analyst, analyzing clinical trials, having a wide amount of information accessible to me which isn't available to everyone else. I was a kid in a candy store, albeit a geeky kid. I learned about tenofovir and entecavir, two of the most common medications used to treat hepatitis b. These medications are antivirals, so they will slow down replication of the virus. There were some problematic side effects with kidneys and bone density. But I knew at the time that better versions were being tested in clinical trials without these side effects.

At 27 years old, I was asked to join my first clinical trial. Suddenly, I was a small cog, contributing to the better treatment for the 300 million people worldwide and an opportunity to finally eradicate this virus. Earlier this year, I just finished my third clinical trial. I've suppressed my hepatitis b to such an extent that my healthcare team has recommended me to come off tenofovir and see if my immune system would kick in and finally get rid of the virus for me. There's still some evidence of hepatitis b replication in my body, but for now, I can say for certain I am well, but I'm not cured.

In April 2022, the UK government set out to reduce HIV transmission to0 by 2030. Alongside HIV, they added in hepatitis C and hepatitis b through opt out emergency department testing in London. That means if you were to enter an emergency department in London, you'll be tested for hiv, hepatitis C and hepatitis b as of standard, and you can opt out if you wish. The preliminary results were shocking. One in 1600 people were diagnosed with HIV, one in 1000 with hepatitis C and one in 300 with hepatitis b. One in 300 previously undiagnosed. That's at least one person in this room today, not including myself.

Now, the problem is we're catching all these people with hepatitis b, but there is no clear link to care. Even many GPs say they need a second opinion when it comes to interpreting hepatitis b blood results. I was fortunate to be diagnosed early and when I was asked to follow up, I got myself back into care.

I could have lived a normal life being ignorant. I could have collapsed one day, walking to work, finding myself with stage 4 liver fibrosis or even liver cancer. I could have had a family and I would have infected them for life. After all, my mum was unknowingly infected, which passed on to myself and I would just be continuing that cycle.

Ah, my mother. I haven't forgotten about my mother. My mother is doing really well. After being on tenofovir for four years, she was recommended to come off it and she seroconverted, meaning her hepatitis b never came back. At 46 years old, she's been cured. So this happens in 4% of people. For the other 96% of people living with hepatitis b on medication, they could be living on medication for the rest of their lives. But it would mean that their viral load would be low enough to not be a threat and they'll be at a reduced risk of developing liver cancer.

Today, I run an organization called Hep B Companion. We provide clear information, support people living with hepatitis b, and signpost access to specialized treatment clinics. The current standard of care is a once a day antiviral tablet. So, as a worldwide community of health professionals, let's challenge the stigma of hepatitis b. Let's embrace our responsibilities to each other, and let's advocate for better testing and treatment. Let's support the clinical trials and the research that might lead us to a cure. And finally, let's make sure that no one goes through this on their own. I don't want to hear any more stories of kids being segregated at birthday parties. Together, we can create a future where hepatitis b isn't a life sentence, but a chapter in a story of hope, resilience and success.

HEALTHCARE, EDUCATION, TECHNOLOGY, HEPATITIS B, STIGMA, CLINICAL TRIALS, TEDX TALKS