From Hopeless patient To Advocate of People living with Hepatitis B. From Tanzania East Africa

I was just a small boy who raised from poor family in a rural area in Tanzania. At the age of 20s, I and my brother we diagnosed positive viral hepatitis B . it was 2017 when we were students in high school. We knew nothing about it, people who had false information were many than who knew the reality about HepsB.

Misconception and lack of awareness lead to the maximum stigma, discrimination, and social isolation that we faced from school, physicians, and everyone who knew that we are hepatitis B positive.

We are required to stop school although it was a few weeks before the final exam and start fundraising from the schoolmate and other people to supporting us in find treatments at muhimbili national hospital. We suffer with a double burden of depression and hardships In finding treatments as most people stigmatized us even medical personnel who treated us in a discriminatory manner just because we had hepatitis B.

the rise of prejudice in society and even to the family where some people told parents to stop us collaborate with other family members just because will transmit them through handshake and feeding together.

Things go harder as parents sold everything that produced at their younger age including land, livestock, and even agricultural products to cover the cost of treatments at Muhimbili National hospital, although we’re not able to cover it all.

The saddest moments in my lived experience of hepatitis B It was a time when my mother was in serious sickness and needed emergency surgery but she refused to admit the hospital before talking to me on phone and confirming that am fine. We talk and we all cried”. This is a bad experience that makes me cry whenever I remember it.

After being admitted to Muhimbili for a confirmatory test and further screening the result showed that my brother’s liver has small ports a sign of cirrhotic liver while I had millions of viral loads and we need medication to avoid more risk of viral replication and manage. Due to the lack of early treatments and medication as a result of Extreme poverty from our families, a few years later after graduate his undergraduate studies he died from liver cancer (Hepatocellular Carcinoma) in early 2021

From there, I remains a hopelessness patient who lacked access to treatment and even manage due to economic hardship and that is what inspire me to be a Hepatitis B advocate from Tanzania to represent the voices of those who can’t speak for fear of stigmatized from their communities while people die in every 30 second for hepatitis complication.

Data from WHO show that 38.4 million people are living with HIV while more than 296 living with chronic hepatitis B and C, The wonder enough is that, half of this number comes from Africa WHO region. This means that hepatitis kills more than HIV and malaria. Global estimation show more than 820,000 people died of viral hepatitis every year and the number is on the rise. Only 6% of all infants born in Africa got a full birth dose vaccine and despite having an effective vaccine for hepatitis for more than 4 decades now, most of the countries do not provide it.

I chose to fight hepatitis B because I don’t want to see many more brothers and sisters die at a young age for the disease that can be prevented by an effective vaccine or managed, hepatitis should be a disease of history, and it is only possible for collaboration and join the effort in advocacy and find a cure as soon as possible.

This became the heavy burden of hepatitis B in economically disadvantaged areas such as Africa where people can’t access treatment due to poverty and lack of awareness. I don’t my status for not attending hospital for a while but my call to all world governments, international institutions, stakeholders, decision-makers, patients with lived experience, and other people to join a movement of eliminating hepatitis as a global public health threat that risk lives of current and future generation if will never be prevented.

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Hi Shaubu
I have read your work with lots of empathy. But first, I must welcome you in our hepb community forum. I am sure you have gone through a lot of writing here and you’re aware of the scope of our unlimited discussion.
I am sorry for agony you went through with your family because of hepb status. So sad is the fact that your brother had to pass on from cirrhosis turn HCC. I hope you are on treatment and precise surveillance due to this"family history."
As members of East Africa community, we are ready to join hands with you for hepb advocacy.
Kinoti.

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Thanks you very much @Kinoti , elimination of hepatitis need great efforts and collaboration from people of different nations across the world. Experience of losing brothers and sisiter is for many people. Others we lack even access of Medicare now due to poverty from our families but still I want to join and heps to represent voice of those who can’t speak it for fear stigmatized

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Thank you for sharing your story, Shaibu. I really appreciate it and it’s great you are finding the strength to stand up for people with Hep B in your country and region.

I also great to have you on the HBV-CAB :slight_smile:
Thomas

Wow @Shaibu Thank you for sharing your story of lows and highs.
Its encouraging to hear voices advocating in every corner of the globe.

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