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Video transcript

My name is Peggy.

My name is Jerry.

My name is Zali.

I live in Boigu.

I live in Boigu.

I live in Boigu.

My name is Waimed Pabai. I’m from Boigu Island. I'm a local here. I like to help my people look after their health and betterment for my community.

It was back in 2017. I had joint pains, and I can’t walk.

Then I bring it into health centre. They’ve been do the blood test and all that. The results come back, and they said your daughters diagnosed for Rheumatica. And I was like, shock. She’s my last one, she’s the last one in the family. I just get my strength back. No, I can’t be like that. I have to support her.

Every month I always get my needle. My needle person is Darian.

I think the most important thing with kids getting their injections is to make sure it’s a positive experience.

When they first walk in the clinic, we calm then down, we give them toys, we yarn, yarn stories, island stories.

If one kid has a needle, you’ll often find that there’ll be another three kids in the room supporting the kids. And I often ask for other kids to come into the room and hold their hand or just be there for support.

Good stuff Jerry, well done.

For Peggy, she said, no Mum, I don’t want to get that injection anymore, I don’t like it, I don’t want it. I said no Peggy, you just have to be brave, its good for your heart. The words like that, I encourage her.

When my daughter Peggy here for friend that diagnosed, Peggy sort of explain it to her. It will be fine, just come into the clinic. Her other friend, well she had the needle, she always asks like where’s Peggy? I want Peggy here, to be here with me.

So, I think education is important around RHD, letting the parents know why they first got it and what the kids will need for the next 10 years, that they will live a normal life.

I just want to support Peggy as she grows up. I just want to be better for her and for other kids who’s getting a needle. Its good for you, its good for your heart, you can with your friend enjoy your life, yeah.

Video transcript

Considering I was young, I didn't really know what was really wrong with me. I was just worried about the fact that something wrong with my heart.

Am I going to die early? Will I be able to, you know, do something with my life?

I've lived in Cairns for eight, nine years. I'm one of six siblings.

There's a big age gap between me and my smaller brothers. It's great to have 'em around, but then sometimes I like spending time with people my age and I can do that in the gym or out, you know, playing volleyball and that's how I like to unwind and get rid of stresses of, you know, school

and other stuff in life.

When he was in year six, I eventually saw that he was losing his feelings on his legs and we rushed him to the emergency. Eventually, when we were told that he had a rheumatic fever, it was a concern for me. I said, can this be repaired?

The way they mentioned the heart, I got really shocked, like, whoa, what's this? What's this? I learned more information about it and they said, if you take these injections, you won't even have to worry about it, it's nothing, and says, you know, try to be brave.

The person who really got me through this was probably my dad got me

to look at it from a different perspective. Oh, if other people have gone

this shouldn't be too hard for me either.

And all I would think of is what were the solutions? Providing an environment where he wouldn't be stressed about the sickness that he has, live a normal life because we were treating him like a, he's a, he's a normal person just like us.

Today, by looking at him, I'm so proud of what, as a family that we've done so far, that he's able to achieve his dreams.

I'm young, I want to enjoy my life 'cause cardiologist told me, oh yeah, just as long as you're get getting your monthly injections, your hearts getting better and so that's, so I'm not really limited on anything. I'd like to tell to other people like me is that you're not alone, other people have been through this and that you'll get through this too.

Video transcript

My name is Percy Quakawoot, and I am 15.

I’m from Townsville. I play basketball, play games, and go to the gym.

I was 9 when I found out I have rheumatic heart disease.

I was limping, wherever I walked because if I would have started to like jog, it would just started hurting even more.

It was like during training. All my friends played, but I couldn’t, so I just felt bad.

He was waking up with pains in his joints. We go to the doctor, and you try to find out what’s going on with him. Didn’t really realise how serious it was. The doctors had just telling us its growing pains or joint paints. You saw another doctor. She did all the tests, got the results back.

A soon as I found out that i got my rheumatic heart disease, they sent me straight to the hospital to get my first injection.

I was panicking, but I thought it was just once so I was like, just get it over and done with. And then I realised that I had to get it every 28 days.

When you know how important it is to have that needle, that pain of that needle is little compared to what he could really go through.

Even though I have to get these injections, I don’t feel any different. After two or three I just got used to it. So, I just kept coming normally.

My biggest support has been my mum.

Percy’s kept really good with it. There will be changes in his mindset, sometimes you get a bit slack, but you got to keep at it and keep going and understand that why its so important to keep getting these needles.

I’m happy to deal with getting those needles if it means not getting heart surgery.

Just be there for your child as rheumatic heart disease it’s really serious, it’s a big thing you got to prioritise.

I know rheumatic heart disease is serious, but if I’m up to date, keep getting the support from my mum and my family ill be all good.

So, my message is, to other people with RHD that you can still live a normal happy life.

Video transcript

My name is Rosharni.

I live in Kuranda.

I like playing sports.

I have two sisters, four brothers.

Run around and play tiggy, or we go to play basketball at the basketball court.

Rosharni, she’s got rhematic fever and she has her injections every month.

Go with her to the doctor, make sure she keeps on top of it.

I was at home when the school rang and said Rosharni couldn’t open her lunch box. I was scared.

And then my mum came, and then the ambulance came, and then we went to the hospital.

They found out that she had rhematic heart.

I didn’t really know much about it. My cousin also has it to so, I asked him, and I talked to him, and they went through that too.

When we get to the doctors, she gets agitated, very scared and don’t want to have it.

While she’s having the needle, we just count.

When I stand up on the chair, she cuddles me. And then I have my needle.

Terry is Rosharni’s nurse, Rosharni loves her, she supports us too you know? Helps us out in any way she can.

After I get my needle, she gives me like a prize.

My niece, she tells Sharni if you don’t want to do it standing up, the needle, why don’t you lie down on the couch, you know? You know, she reassures her and tell her to have it all the time, you know?

She said, why do I have to get the needles? Why me? You know. I just tell her that she has to, you know. Have the needle to keep her heart healthy.

My message to other people like me, is to keep getting your needle, because it’ll stop you from getting sick.

Video transcript

I was in hospital for four days. I didn't really know what was going on. I was asking mum, why am I here? And they're putting like needles and everything out.

I’m the second oldest of five kids, I enjoy sports a lot, playing like rugby league and even if like I hurt myself, some of the girls would just be like, oh no, you're fine, just get up and just walk it off. Everyone’s like supportive and like when someone scores a try like they're very like cheerful.

In 2013, we'd gone out camping. I remember the bloke from the tent opposite us had come over and asked me if I'd noticed her twitching and movements. He said, I hope you don't mind, but I'm a doctor. And he wrote down on a piece of paper what he thought it was, and I remember the words on that piece of paper was rheumatic fever and that he believed she was presenting the symptoms Um, rheumatic chorea.

Sometimes I get shakes or like twitches in my fingers and my hand and the doctor calls it chorea. When the chorea starts to present, I'll go on little tablets.

I was ten when I first went for my injection and when it first got in my skin and started injecting it, I'm like squeezing my mom's hand. I'm like wanting to cry.

This isn't just something that's going to disappear overnight, this is something we're going to have to live with. So what do I need to do as her mom so that she's not afraid?

My parents are definitely my biggest supporters.

You know, I might not see a difference now, but when she's 30, 40 years old and my daughter's heart is in good condition because of everything that we've done now, well, it was all worth it, in the end.

I feel normal like I don't feel any different to what anyone else would, doing what I like, like being active, going out with friends, I just feel normal and nothing different.

We need to be educated a lot more in regards to what we can do, be aware of the symptoms and know when they present. If you can understand what's going on and you gain that knowledge, that knowledge then can become power, and by understanding it all, it makes it a lot easier for you to go forward and do the right thing by your child.

The message that I would give for other people that have what I have is just don't be afraid, gain the knowledge, if you have any concerns, ask the doctor about it. Know that it is going to get better within the long term.

Video transcript

My name is Tiana. I like drawing and stuff, painting. I have three brothers and one sister. I go to school, and my favorite subject is sports and arts, but I like talking to my friends more.

Is that true?

Yep.

I first found out I had rheumatic heart disease when I was eight years old.

My name is Nancy and I live in Mission Beach. The start of Tiana's sickness, we went to the beach, her elbows and knees started to feel painful, and her hands started to feel sore. The next day we went to the doctors, the doctors checked her heart and it was beating really fast.

So we went to the Cairns hospital and I had a couple of blood tests.

We stayed in the hospital for five days. The doctor told us that she needed to have surgery, like we couldn't sleep at night.

Came back home. The doctors gave her a script for Tiana’s medications and she had to get injections every month.

My mom comes with me to get my injection because it help me feel not so scared.

She'll be beside Tiana, telling Tiana not to be scared, because if she's scared, it'll be sore. She feels normal, I guess, 'cause mom and dad's always beside her.

Once she's out of surgery, we've come together as one just to pray, sing songs, to thank the doctors for everything they've done.

My message for all the other kids like me is to keep going to the doctor because they will make you better.

Video transcript

My name is Ali-John Charlie. I was born and raised on Thursday Island. I love to go spearing in the mangroves, love to go out of the boat and stuff.

I got four brothers, two sisters.

My older brother, me and him like to play footy or go spearing in the mangroves on the edge of the reef.

In July 2018, I was diagnosed with RHD.

I was called in the next day, into the clinic room. That’s when the cardiologist told me the news that my son was diagnosed with the rheumatic heart disease.

Here I am helping other families and to have my son diagnosed with something you know, it kind of upset me a little bit but its not something I’m going to sit and drown with, I have to support my son 100% to make sure that he has a better life.

I have to get a needle every month. Every year I get a scan. The first couple of times when I was getting the needle, my mum was there in the room. It was painful until I got used to it.

We want to try to educate the families, so the families can take control because we only there from 8 am – 5 pm but after hours and weekends and what happens then? So that support really has to come from the families.

Well, I have a daughter who’s been diagnosed with rheumatic heart disease when she was in primary school, in year four they picked it up. She’s turning 19 this year, so never missed the needle. She’s always on time.

My name is Rothanna Ahwang, I’m from Thursday Island. I live up here with all my family. I work at the childcare. I just enjoy working with the kids. I’m studying soon, diploma in early childhood service.

A bit painful getting the needles, but then you get used to it.

My Mum and Dad, they support me in this. They push me to go, keep healthy, go get my needles done.

It’s not only the getting that Bicillin every month, but there’s other things to look out for like their diet and their exercise, how they live their lives each day and prevent them from getting another episode.

We talk to him a lot about the negative things about rheumatic heart and the positive things, so he has a good understanding of it and what he needs to do.

Everything we do is the same, we don’t leave her out because she’s got rheumatic. We play sports together, we go camping together, we go down the beach together, we do lots of family things together.

Yes, it’s something we need to have it out there more for families to know that its manageable, its preventable

Health is very important, so its important to go and get your needles. Like you have doctors and family around to support you.

When you look after yourself and your health, you are looking after your heart as well.

Video transcript

My name is Jeremiah Costello, I’m from Yarrabah in Far North Queensland, I’m 22 years old.

What I like to do for fun, hang out with mates, sometimes go fishing.

In 2005 I was diagnosed with Rheumatic Fever.

When I first got the symptoms, I was just scared, you know?

Yeah, bit scared and worried and so my dad explained it to me. He said keep update with your needle. You know, that’s how you won’t get sick and get seen by them heart doctors.

My job as a health worker is to advocate for my people and to help them so they can help themselves. Give them education, building that rapport with them too.

I was scared of needles, but I got used to it. I started going to the clinic myself. You’re only there for like 3 or 4 minutes if you keep up to date. Yeah, you can overcome this challenge you know.

All my family, most important to me, I have to go for my check-ups otherwise I get sick and who’s going to watch them kids you know? I’m trying to set a good example for them.

Yarrabah is a small community. Everyone knows everyone. A lot of people in the community here has rheumatic. I feel very comfortable you know. I’m not the only one who has this diagnosis, and we can like, support each other.

When I first got the rheumatic heart diagnosed, I questioned the doctors about it. They said you just keep yourself occupied. The only way I could keep myself occupied is doing the things that I used to do, going out and getting active in my life. The big thing is to just keep moving around and help one another and share with one another.

Well, my little sister just found out recently, like two years ago. I just tell her if you keep up to date, you’ll be off it, you know? If you keep getting the Bicillin.

Some of the adults have gone off the Bicillin now, that’s a wonderful feeling to know that their Bicillin has been ceased by the Specialist. It doesn’t end there. They still have to have their follow ups.

When you tell me the news that I didn’t have Rheumatic anymore, I felt relieved, after all those years, you know?

I encourage you to have your injection every time and on time, that is the only protection and prevention against the bug.

My message for other people would be to think positive.

See the doctor regularly.

To keep update with their needles and checkup, go to the hospital get checked up.

And don’t give up.