Hi my name is Aunty Mary. I want to tell you a story about rheumatic heart disease, and how this has affected my family.
My nephew Michael is 10 years old.
He has always been a fit and healthy boy.
He loves to play football, and is always running around. Last year Michael missed a lot of football, because he got sick with rheumatic heart disease.
I want everybody to know my family’s story, so we can stop our kids getting sick hearts, and stop rheumatic heart disease in our people.
What is Rheumatic Fever?
Rheumatic fever is a sickness caused by a germ called Streptococcus, also known as ‘strep’.
The strep germ is a common cause of sore throats and skin sores in children aged 5-14 years.
In some children and adults ‘strep’ throat can cause sickness in other parts of the body: joints, skin, heart and the brain.
This is known as acute rheumatic fever.
How will I know if it is Acute Rheumatic Fever?
If your child has any of the following signs it could be rheumatic fever:
- sore or swollen joints (knees, ankles, elbows, wrists)
- a fever
- a skin rash (on the trunk, arms and legs)
- jerky movements and difficulty walking
- lumps under the skin (elbow, wrist, knees and ankles).
If your child has any of these signs or symptoms, they need to be brought to the clinic or hospital for tests. This is the only way to know for certain if it is acute rheumatic fever.
Will the symptoms of Acute Rheumatic Fever go away?
Rheumatic fever does not cause any lasting damage to the joints, skin or brain. However rheumatic fever can cause long term damage to the heart.
This is known as rheumatic heart disease.
Rheumatic fever can be prevented in children by getting all ‘sore throats’ reviewed by your local clinic staff.
This is particularly important in central and northern Australia where there are high rates of rheumatic heart disease.
One day Michael was sent home from school, because he was complaining of pain in his knees and legs. He was limping, and was finding it difficult to walk. I was worried about Michael, because he was such a fit and healthy boy.
I took him to the clinic to get a check up. The clinic staff asked a lot of questions. They said that Michael had a fever. Because Michael had joint pain and a fever the clinic staff explained that one possibility could be acute rheumatic fever.
After speaking with the Doctor, the clinic staff decided to send Michael to hospital in town, to do an ultrasound of his heart and other tests.
The ultrasound of the heart is called an echocardiogram. This test will show if there is any damage to the valves of Michael’s heart.
What happens if my child or family member has an acute episode of rheumatic fever?
Clinic staff will send your child or family member to the hospital to confirm if they have acute rheumatic fever.
Your child/family member may need to stay in hospital for a few days/weeks to have tests such as an ultrasound of the heart and blood tests.
Hospital staff will also treat the fever and joint pain, so your family member is comfortable.
How does Rheumatic Fever effect the heart?
Rheumatic fever can cause lasting damage to the valves of the heart.
The valves are like one way doors of the heart. It is important that the valves of the heart stay healthy, to make sure the blood flows in the right direction.
Every time your child/family member has an episode of acute rheumatic fever, it can cause more damage to the heart valves.
Michael’s ultrasound of his heart showed that he has some damage to the valves.
The hospital staff explained that the damage to the heart valves is mild, but could get worse if he has another episode of rheumatic fever.
The most effective way to stop any further damage to Michael’s heart is long-term injections with penicillin, and regular check ups by clinic staff and specialists.
How can I stop my child or family member from having another episode of ARF?
The best way to stop another episode of acute rheumatic fever in your child/family is to make sure that they have regular injections of penicillin.
- Must be every 28 days
- Are given in your child’s thigh or bottom
- Penicillin injections are given by clinic staff. Clinic staff will work with you and your family to make sure getting all these injections is possible
It is very important that your child or family member does not get acute rheumatic fever again.
Another episode can cause long term damage to the heart valves.
When Michael came home from hospital, he started his 3-4 weekly penicillin injections. He did not like them at first, but he understands how important they are, and is getting used to it.
To prevent any further damage to his heart, Michael needs to have penicillin injections every 3-4 weeks until he is 21 years old.
My family understands the importance of Michael getting all of his injections. We let clinic staff know if we are going bush or to town, so they can arrange his injections, so he does not miss any.
What follow up will my child or family member need if they have rheumatic heart disease?
They will need to be taken to the clinic every 3-4 weeks for penicillin injections to prevent another episode of acute rheumatic fever.
They will need regular follow up by the clinic, dentist and other specialists.
How long will my child or family member need to get these injections for?
It is very important that your child does not miss injections. If they do miss an injection, speak with clinic staff, and they will organise an injection as soon as possible.
Please let clinic staff know if you are moving, or going on holiday. They can arrange ongoing treatment.
Penicillin injections should not be stopped without discussing with your clinic staff/doctor.
What else do I need to know if my child or family member has rheumatic heart disease?
It is important that your child or family member has regular dental checkups.
The dentist needs to know that your child/family member has rheumatic heart disease, as they will need extra antibiotics before an appointment to stop any further damage to the heart.
You need to help your child to look after their teeth and avoid any infection by regular brushing and dental checks.
You need to tell your family dentist that your child has rheumatic heart disease.
Michael has recently had his 14th birthday.
He continues to go to the clinic every 3 to 4 weeks for his injections, and he is fit and healthy.
His team are doing well at footy this year, and Michael has not missed a match this season.
Will my child or family member be able to lead a normal life?
With proper care and regular penicillin injections, most children with rheumatic fever lead a normal life.
The important thing is to make sure your child never has another attack of acute rheumatic fever.
The only way you can do this is make sure that they have long term penicillin injections.
Please remember: if your child has a sore throat, fever or painful joints go to your clinic for a check up.
THINK Acute Rheumatic Fever.
STOP Rheumatic Heart Disease.