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Rheumatic Heart Disease Australia

RHD Australia

Young role model gives 100% to get 100%

At 14 years old, Jamayah Mooney is 6 years into a ten year treatment plan to ensure she doesn’t have a recurrence of acute rheumatic fever (ARF). The treatment plan requires a penicillin injection every 23-28 days. That’s around 90 injections over the past 6 years. She’s yet to miss a single injection. She knows that missing an injection can leave her vulnerable to a recurrence of ARF. And she knows that further occurrences of ARF can lead to rheumatic heart disease (RHD) and even open heart surgery.

Her mum, Danielle, says “she’s so good about it, she remembers every month when her needle is due, without me even having to tell her. She knows she has to get the needle and she knows it’s a little bit painful, but she prefers to have it done than to having surgery or getting sick again”.

Jamayah’s also a great role model and has lots of advice for people who need injections. “You need to be brave. Make sure you get your injections and don’t forget, it’s really important. I usually get my injections in the morning and then go to school. Sometimes my leg gets a little sore so school helps me take my mind off of it [soreness] and walking around helps too”.

And Jamayah and mum know that while injections are important, there are other things to think about when it comes to Jamayah’s health. Mum says “She makes sure she goes to the dentist every six months to keep her teeth and gums healthy. She’s also really good about making sure she washes her hands and keeps her skin clean to prevent skin infections like school sores. She drinks lots of water and gets lots of rest and if she gets a sore throat or infection we go straight to the doctor. We just try to make sure she’s really healthy”.

On one of her checkups at Lady Cilento Children’s Hospital in Brisbane, Jamayah met other children with ARF and their families. It was from them that she learned firsthand how serious ARF can be if it’s not treated correctly. Jamayah’s mum recalls “There were some children there that had rheumatic fever for the second time. We spoke to some of the nurses and the parents and we learned the damage to these kids’ hearts was so severe they needed surgery. After seeing all those kids and speaking with the families, doctors and nurses, it really scared Jamayah. She was asking if she would have to have surgery if she had a recurrence. I said ‘yep’, that’s what happens if you don’t have your injections”.

ARF is an illness caused by an autoimmune response to a bacterial infection with group A streptococcus, commonly called the strep bacteria. In some cases, the immune system gets confused when reacting to the infection and the result is a generalised inflammatory illness that is called acute rheumatic fever.

ARF affects the heart, joints, brain and skin. The acute episode can last for several weeks with significant joint pain, fevers and other symptoms requiring hospitalisation. The symptoms of ARF typically leave no lasting damage to the brain, joints or skin. However the damage to the heart valves may remain once the episode of ARF has resolved. This is known as rheumatic heart disease. Recurrent strep infections and episodes of ARF cause further damage to heart valves.

There is currently no single test to diagnose acute rheumatic fever (ARF). Diagnosis is a doctor’s decision based on clinical assessment and the identification of a number of signs and symptoms that are associated with the illness. And with the variety of signs and symptoms it can be difficult for mums and dads to know when their children should go to the hospital.

In Jamayah’s case and many in many other cases, diagnosis can be a difficult. For Jamayah, it started with a sore throat and skin sore and a week later she was in intensive care. Danielle recounted “You know overall, she didn’t seem that sick. A couple weeks before [diagnosis], she had a sore throat and then I noticed a sore on her leg. She was on my bed, feeling a bit lethargic and she said her feet hurt. But she didn’t have a fever and she wasn’t vomiting so I thought it may have just been a virus. It wasn’t until later in the week when she said all her joints hurt that I took her to the doctor. The doctor told us she had a urinary tract infection. The next day she collapsed in the shower. So we rang 000 and rushed to the hospital. I couldn’t believe it, we went in there thinking she had a urinary tract infection and a short time later she was being rushed off to intensive care unit with leaking heart valves.”

That’s how ARF works. It starts with a sore throat and then some time later, a host of other symptoms appear, which to someone who doesn’t know what to look for can seem random and seemingly unconnected. Even when you may be looking for it, diagnosis can sometimes take a couple of days.

For clinicians, we always recommend the downloading the ARF diagnosis calculator to help with this complex diagnosis.