Deadly Questions About RHD

Being diagnosed with Rheumatic Heart Disease (RHD) can bring up a lot of questions. You might be wondering what it means for your health, why treatment is important, what you can still do, and what life with RHD might look like in the future.

This resource answers some of the most common questions asked by young people living with RHD. It has been developed to provide clear, practical information to help you better understand your condition, feel more confident managing your health, and know where to go for support when you need it.

Remember, you are not alone. There are people, services and communities ready to support you every step of the way.

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What is the difference between RHD and ARF?

ARF (Acute Rheumatic Fever) is an illness that can happen after your body gets an infection from bacteria (Strep A), such as a strep throat or skin infection.

Sometimes, your body’s defence system (immune system) gets confused and starts attacking its own healthy parts, including your joints, skin, brain and heart.

If ARF is treated quickly, most people can recover, especially if the heart valves are not damaged. RHD (Rheumatic Heart Disease) is what can develop if ARF damages the valves in your heart. The heart valves are like doors inside your heart, helping blood move through the heart in the right direction. If the valves become damaged, they may not open and close properly. They can leak and cause your heart to not pump as well. RHD is lifelong and does not go away.

Can you play sports with RHD and a leaking valve? What are the limitations?

Yes, most people with RHD can play sports, but it depends on how badly the heart valve is leaking. Some people may need to avoid intense or contact sports if their heart is under too much stress. Always check with your doctor or heart specialist to find out what activities are safe for you so you can stay healthy and active.

What is RHD, and how can I explain it to my friends and family in simple terms?

Rheumatic Heart Disease (RHD) is when there is damage to one or more of the valves in your heart following Acute Rheumatic Fever (ARF). RHD happens because your immune system, while fighting a Strep A infection, accidentally attacks the heart valves, sometimes causing permanent damage. You can explain it simply by saying: “I have RHD, which means my heart was damaged after my body fought off a strep infection, like strep throat. The infection confused my immune system, so instead of only fighting the germs, it also hurt my heart. I now need regular treatment to help protect my heart.”

For Bicillin treatment, is it better to have the needle or to take tablets— what is the difference?

Getting the injections (called Bicillin) is the most effective way to prevent ARF from coming back.

Needle: You only need one needle every three or four weeks. This medicine stays in your body for 28 days to kill any Strep bugs, and will prevent another episode of ARF which can cause more damage to your heart.
Tablets: For some people, the tablets are a good option, but for many, the needles are more effective. Chat to your doctor or nurse.

Why is the LA Bicillin injection long term?

Acute Rhuematic Fever (ARF) which causes heart damage can come back if you don’t get regular treatment. Your Bicillin injections will stop you getting ARF and prevent any further damage to your heart. You may need Bicillin every month for 10 years or until you are 21 years old or 35 years old depending on how your heart is functioning. Make sure you attend all your appointments with your heart doctor or nurse so they can keep checking how your heart is going.

How can I make the needle less painful?

You are the boss of your body. Talk to your health worker, tell them where you would like your needle to go and if you would like an ice pack or to look at your phone or listen to music to be distracted. Your health worker might have some good ideas too!

What happens if I miss my bicillin injection or don’t take it on time?

If you miss or are late with your treatment your body isn’t protected from strep infections, and you can get ARF again. This can cause more damage to your heart. That could mean possible hospital visits, or needing heart surgery later on.

How many times does ARF need to occur for RHD to develop?

Just one episode of ARF can cause RHD, especially if it’s not treated quickly. But repeated episodes make it more likely that damage may build up in the heart valves over time.

Why is RHD more common amongst Aboriginal and Torres Strait Islander people compared to non-Aboriginal and Torres Strait Islander people?

RHD is more common in Aboriginal and Torres Strait Islander communities for a mix of reasons:

♥ Some Aboriginal and Torres Strait Islander people may have a higher chance of getting infections from Strep A bacteria, which can lead to Acute ARF and then RHD.

♥ In some communities, more people live together in smaller spaces. This makes it easier for germs like Strep A to spread from person to person.

♥ Less access to healthcare or early treatment. Sometimes, it’s harder to see a doctor quickly or get the right treatment in remote or rural areas. This means infections might not be treated early, increasing the risk of ARF and RHD.

Are there any risks involved with pregnancies or birth control while having RHD?

Yes – pregnancy puts extra pressure on your heart, especially if you have RHD. You’ll need special care during pregnancy. Some birth control pills can also raise risks for people with heart problems, so talk to your health worker about safe options.

What other ways are there to manage RHD instead of the Bicillin injection?

The most important thing you can do to prevent ARF is to take your Bicillin every three to four weeks. Other ways to help manage RHD is by:

♥ Eating healthy foods and staying active

♥ Avoiding smoking and drinking alcohol

♥ Taking care of your teeth and skin (to reduce infections)

♥ Keeping up with check-ups and heart scans

♥ Visiting the clinic or hospital if you are ever sick with skin sores, sore throat, fever or painful or swollen joints.

Can I pass on RHD to my children?

No, RHD is not genetic, so you can’t directly pass it on. But your children can get strep throat or skin infections, which can lead to ARF and RHD if not treated early. So, it’s more about being aware and preventing infection early for your kids.

Who should I speak to if I have more questions?

You can talk to your doctor, nurse, Aboriginal health worker or Aboriginal
health practitioner, or your local hospital or health service. You can also access support and information through 13YARN, the Heart Foundation, and WellMob.

Looking for more information? Browse resources created for Aboriginal and Torres Strait Islander heart families here.

How HeartKids Can Help

Our support team can offer both emotional and practical support, including mental health support. You get help through the following channels:|

HeartKids Helpline
The HeartKids Helpline is open Monday-Friday, 9am-5pm AEST and is the easiest way to get connected to the most relevant
support for you.

Call: 1800 432 785
Webchat: heartkids.org.au

This resource was developed by HeartKids with input from registered nurses and Aboriginal and Torres Strait Islander health workers and practitioners. Content was informed by young people living with Rheumatic Heart Disease (RHD) and reviewed by the HeartKids Clinical, Research and Support Advisory Committee.