In 1998, I was taken to my local GP by my parents for a routine vaccination appointment before going on holiday. You don’t think twice about going to the doctor at 8 years old.

Then there was a second appointment for a blood test, then a third. It was only then I started to question why we were visiting the doctors so often.

Then the diagnosis. The doctor told my parents I had hepatitis B, a liver infection that usually only lasts a few months, but for some people including me, you can have long-term chronic hepatitis B.

Facing fear, stigma and isolation

Then came the speculation, where did I get it from? And so, the diagnosis had a knock-on effect. As hepatitis B is commonly passed on from mother to baby, my mother was then tested. She was confirmed positive which means I had hepatitis B from birth.

Living with hepatitis B in the 90s to the 2000s wasn’t easy, especially as a kid.

Birthday parties would start off with a warning from my family: “Remember, don’t share food with the other kids… don’t play with the other kids’ toys… don’t touch the other kids”.

These restrictions were not created for my safety, or the safety of other kids. They were created out of fear and misinformation, I felt isolated, different and misunderstood.

Information on hepatitis B wasn’t readily available at that time, and it was often generalised with the other 4 types of hepatitis – A, C, D and E. This was because the condition was so poorly understood and it’s not much better now.

I had to have my guard up all the time. I struggled to approach and talk to people, and I found myself lost for words when someone new would talk to me.

I went to hospital often and was injected with medication in my leg 3 times weekly which was strange and traumatising as a child, especially because I had no symptoms and didn’t feel unwell. But from my understanding as a young person, my blood was dangerous to other people.

Building knowledge and a new future

It was only when I met a doctor at King’s College Hospital when I was 19 years old that I gained a real understanding of the virus. I was told I can live a normal life; I can be like other people, and he advised enriching my understanding would become a key part of overcoming it.

So that’s what I did. I studied biomedical science at King’s College London and pursued a career in life sciences. Eventually, I found myself being part of clinical trials to test antiviral drugs which work by slowing down replication of the virus. I felt I could contribute to the ever-evolving science to one day find a cure for hepatitis B. The last clinical trial was partially successful. The antiviral medication suppressed my viral load to the extent that I no longer require further medication – I’m tested twice a year as still have traces of hepatitis B present.

The impact of opt-out testing

In April 2022, in an attempt to reduce HIV transmission rates in the UK to zero by 2030, NHS England began testing for hepatitis B and C alongside HIV through the Blood Borne Virus Opt-Out Testing Programme in emergency departments in 5 sites.  The programme has been expanded to 89 across England. This is an important step to ensuring more people are diagnosed with hepatitis B earlier, so they can be treated to prevent liver damage and stop them from passing the virus on.

When I saw the preliminary results and learnt how many people were diagnosed with hepatitis B, a part of me felt like I wasn’t alone anymore. I wanted to help those people who, like I did post diagnosis, will more than likely build a wall and hide away from others due to the stigma associated with the virus.

Community and peer support

Today, I run an organisation called Hep B Companion, which provides community support for people living with hepatitis B, connecting them to peer support and inviting them into a space where they can understand their condition and come to terms with their diagnosis.

As one of my peers explained: “Test results freak me out because I don’t know what they really mean, so I ask Supa to tell me in simple non-medical speak because, honestly, doctors might as well speak to me in Greek as I often don’t understand them”.

I regularly hear stories like my own from people living with hepatitis B, to people newly diagnosed because of the opt-out programme. They are scared about telling their families and spreading the virus and are concerned about how other people perceive them. That’s why peer support is so important.

Let’s challenge the stigma

Together let’s challenge the stigma around hepatitis, embrace our responsibility to each other and advocate for better access to testing and treatment. Together we can create a future where hepatitis B is not a life sentence but a chapter in a story of resilience, hope and success.

Watch Supa’s recent Ted Talk on his journey from diagnosis, to understanding and advocacy.

Publication reference: BL00014