Margie’s Story: Parent To A Child With ARF

Feb 21, 2018

When Liana complained of a sore foot and showed signs of a fever, her mum Margie rushed her to hospital. An X-ray of her foot revealed no obvious injury, so she was sent home and advised to take painkillers.

But Margie persisted. She took Liana to her local clinic a few days later, where the doctor ordered blood tests, suspecting acute rheumatic fever (ARF) – the precursor to rheumatic heart disease.

The results of the blood test confirmed this diagnosis, and Liana was immediately placed on a schedule of long-acting penicillin injections every 21-28 days.

She will need these injections until she is at least 21 in order to prevent further episodes of ARF.

Having worked as a health worker, Margie has seen first-hand the importance of kids living with ARF adhering to their treatment schedule, and the complications which can arise if they do not.

Because the injections are so thick and viscous, they can be very painful, which means kids and young adults often avoid going to the clinic if they can. But not receiving their treatment on time can cause their condition to deteriorate, leading to rheumatic heart disease – which can require more serious medical interventions such as open heart surgery.

“Initially I was stressed about how I was going to get her to have the injections every month, as I know they are very painful.

“The first six months were difficult. She found the injections painful during, and for a few days after, and would be upset. If she had a bad experience, it would make her anxious for the next injection,” Margie says.

For kids like Liana, it is not just the pain of the injections that can stop them receiving their treatment – it is the inconvenience of having to go to the clinic every three to four weeks. Margie says incorporating the regular injections into their life was a big adjustment for them both.

“We have to work around her schedule as she has school, and sports after school most days. We try to get into the clinic on an afternoon she has free so she can rest that night,” Margie says.

Five years on from her diagnosis, Liana is now confident going to the clinic and receiving the injections herself.

“Liana reminds me when her injections are due. I find it difficult to keep track of the time but she remembers,” Margie says.

For kids like Liana, a diagnosis of ARF changes the trajectory of their childhood. Having an injection every 21-28 days until adulthood is a big responsibility, but one Liana knows she must shoulder to give herself the brightest future.

 

This story originally appeared in ‘The cost of inaction on rheumatic heart disease in Australia,’ published by the END RHD CRE in December 2018. Read the report in full here

 

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