The Impact of Hepatitis B: a patient journey

My name is Yvonne Drazic. I was born in Switzerland in 1966, came over to Australia in 1994. I have lived with chronic hepatitis B
most of my life. I am a mother of two children. I am also doing research now
into hepatitis B because it is so relevant to me and I really want to make a difference. I want to do something about it because I know how neglected
and under-researched it is. I’m doing this research project
at the moment with a community that is highly
affected, that is the Hmong community. They’re refugees. My name is Jenny Ly.
My background is Hmong. My parents originate from Laos.
My father fought in the Vietnam War. Part of that war,
they had to run away from Laos. They crossed the Mekong River
and became refugees in Thailand. Then spent up to a decade, I think,
in refugee camps in Thailand. Then they came as political refugees
to Australia and went to America. I was in my mum’s belly
when I came to Australia. I was born in Sydney,
so I have the citizenship. After that,
my parents wanted a warm climate. They started to explore.
They went north and found Queensland. According to research in America, they would have a really high prevalence
of hepatitis B but almost no knowledge about it. Here in Cairns, we do have quite a large
Hmong community, so I thought it is a good opportunity
to help them. I’m very thankful that I’ve met Yvonne,
who’s doing research on hepatitis B and the effects it has on our community. It shows that there are people out there
who care for us. – Do you want a cup of tea?
– Yes, please. It’s quite likely that I have been
infected as a young child, although I am not quite sure about that
because I’ve kind of accepted the fact that I’ll never know how
I got this virus. I was diagnosed when I wanted
to give blood for the first time. I went to the doctor’s, had a few tests and it was confirmed
that it was chronic hepatitis B. At the time,
that was in the early-’80s some time, there was really not much information
out there at all. Eventually, I was just told that I was a healthy carrier
of hepatitis B. For me, the word ‘healthy’ means that
you don’t have to worry about it. Also, my parents didn’t
seem to be too worried. I don’t know what exactly that meant,
they just weren’t talking about it and really didn’t seem very interested
about it. That doesn’t mean that
they really weren’t, but I was a bit of a difficult teenager
at that time, so I interpreted that as,
it probably couldn’t be too bad, then. So I didn’t worry about it
for many years. My husband, when we got together,
I already knew that I had hep B. He got tested and it turned out that
he was already immune, so he must have been exposed to it
at some point. Then when we had the children, the midwives, the doctors
all knew I had hep B. Basically,
there wasn’t much mention of it. I just trusted that the midwives
would do the right thing, and the kids both got immunised
properly. They’re hep-B free. Research has shown that
mothers who test positive, or who are positive for
chronic hepatitis B during pregnancy are then, after the birth,
not being followed up, which of course is not good enough. This is a great opportunity
to detect and find out that somebody has chronic hepatitis B. It’s not acceptable if,
after the birth of the child, this woman is not being followed up, and this happens, apparently,
still quite a lot. I’m Yvonne Drazic. I’m at JCU
doing PhD research in hepatitis B. I’ve got hepatitis B myself. When the kids were still quite young,
I did get some kind of a symptom. It’s a mild discomfort,
not really painful, but you can feel something in the area
where the liver sits. It was so mild
that it’s very easy to ignore. So for a long time,
I didn’t think much of it. I suppose I belong to those people
who put things off. When I got the diagnosis
of the early cirrhosis, that was probably the lowest point
that I had. But I am a positive person generally,
an optimistic person, so I didn’t stay down for long. I had a lot of support from my family. They were probably even more worried
than I. That means my immediate family here,
my husband and my kids. They’re great. Then I had great support
from Rhondda Lewis at the Cairns Sexual Health Service. She’s awesome. She’s become
a good friend in the meantime. I met some other people as well
who have hepatitis C, mainly. We’ve got a good group there now. But the most support at the beginning,
before I met all those people, I got from the HB List, the online list. That was basically always quite enough
for me of support that I needed. I didn’t get emotionally too down
or anything. Through that, I got into the whole
research in hepatitis B thing. So many people present really late, present maybe even
in the late stages of liver cancer, when they then only really survive
for a few months. That’s just too sad.
We can’t have that happen anymore. I have a cousin who is living in Hobart,
Tasmania. Was anyone aware that hepatitis B could
be a problem in the Hmong community, in the Hmong people? Most people,
they don’t know about hep B. But the nurses and the doctors, they are teaching the Hmong
in the hospital that hepatitis B
is a thing to know about and to learn how to take care of. – Something to look out for.
– Yes. In the Hmong community, the person I’ve been working most with
is Mr Vang Yee Chang. He is a community leader,
a respected person in the community. One thing I did was
recording a little video with him in the Hmong language,
where he talks about the project and encourages people to be involved
and participate. It is quite a story, Vang Yee. It is known that all Asian migrants are
affected by hepatitis B, highly affected. It’s just that this group could be even higher than, for example,
Chinese people. That’s not well known yet. They said, ‘When you get to Australia,
go straight to your family doctor’s, because they had family doctors… When we arrive, the first week, we have to see doctors
to do a check – blood tests, everything. YVONNE: You think they tested for
hepatitis B as well? Yeah, they tested everything. They mostly don’t know
that it is a problem that could be affecting their community
more than others. Generally, there’s a lot of people who don’t know much about what’s
going on in the body in the first place. You have to start at the very basics
and explain what the liver is, what the liver does and how it can be
affected by hepatitis B. Since meeting you,
I’ve talked to a few people, but none of them are aware of it,
even though they’re educated now. They’ve been to doctors and hospitals. A lot of them have given birth
and still don’t know much about hep B. It’s only once I’ve mentioned it
through you that they’ve done research. Even the younger generation
are still unaware of it. YVONNE: Then there’s Jenny Ly, who
I’ve only met a couple of months ago. She has just been such a big help
with telling me about things that Mr Chang might have not
thought about telling me, for example. Just a different perspective. I’ve since talked to
two or three other people and had all these conversations
about hepatitis B and about health care in the community. It’s helped a lot. We’re going to do
some education sessions and hopefully get as many people
as possible to come to those. That’s where you can help me – to try and get those people
to give the information first and then attend those
education sessions, then hopefully know enough about it
that they can look after themselves. The Hmong people, in the past years, the Hmong people don’t know
about the disease because they have no technologies
to see what the disease is. The Hmong only know about shamans. Even the people with the disease say,
‘The shaman says this and that,’ and people still die, you know?
They see people still die. After the Hmong people have educated
a bit, they know that a disease is a disease and the holy spirit, the soul,
is the soul. They are different. In most communities, like in Cairns
and Innisfail, there are shamans. The shamanistic way
is passed down through our history. To be a shaman, there’s many rituals
you have to go through in order just to be a shaman. The process of healing someone
or looking after someone is all depending on each shaman as well. We do have traditional hospitals
and doctors we go to, because we are in a civilised country, but the shamanistic way is still very
prevalent in most communities up here. YVONNE: You can eat them raw. JENNY: In my experience,
once there is something that is wrong and they’re aware of it, they do follow
the check-ups and appointments in place for them. Especially if there’s a reminder,
there’s no reason for them not to go. Even older people as well? Yes, because there is awareness
and concern there and a bit of urgency put in place. There are a few things
you maybe want to adjust once you get a diagnosis of cirrhosis,
especially. No alcohol.
So as soon as I got that diagnosis, I didn’t touch a drop anymore. I never had a problem with that. It’s OK. I just got used to it. Otherwise,
I probably always ate quite healthy. I have one thing, and that’s chocolate. I eat heaps of chocolate. Otherwise I do have a healthy diet.
I don’t eat a lot of junk food at all. No fatty meats and stuff. A good, balanced diet with lots
of fresh fruit and vegetables will do. You don’t have to overdo it or anything. If I heard that somebody got diagnosed
with hepatitis B, it’s very important
that they tell their family and the people around them,
people they grew up with, especially, in the same household. It’s very important that
contact tracing is done and everyone who has been
living in the same household and has been growing up with the person
should get tested just to make sure. There’s no guarantee
or no one hundred per cent risk that they would have it too,
but there is a risk. You just have to make sure. Captions by CSI Australia