Tip:
Highlight text to annotate it
X
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 *** 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