Billi-Joh’s story: diagnosed with RHD aged eight

Feb 1, 2019 | Stories

Billi-Joh holds a fish while smiling at the camera

Billi-Joh doesn’t let her RHD hold her back from living her life to the full.

Meet Billi-Joh. She’s 15 years old, and lives in a remote Aboriginal community at the top of Western Australia. Like many teenagers, her mum says that she’s still finding her place in the world.

What sets her apart from her peers is that she is navigating the ups and downs of adolescence while also living with rheumatic heart disease (RHD) – a completely preventable, yet potentially fatal disease affecting around 4,500 Aboriginal and Torres Strait Islander Australians.

The first sign of trouble was when aged eight, Billi-Joh complained of a sore ankle. At the time her family weren’t too worried, as she had just returned from a trip to a neighbouring community where she had been playing with family and friends.

But a few days later, her condition had deteriorated so much that she was unable to walk. Panicked, her mum Belinda rushed her to the local clinic, who referred them to the nearest hospital in Broome – three hours drive away.

After three weeks in hospital Billi-Joh was diagnosed as having RHD – a diagnosis Belinda says took them all by surprise.

“I never thought it would happen to us” she says.

Being so young, Billi-Joh did not understand what rheumatic heart disease was, and how it would impact her life. She just missed her family and friends, and struggled being confined to a hospital room.

“She wanted to jump around but she couldn’t do that. It was hard for her to stay in the bed” Belinda says.

Treatment for rheumatic heart disease involves one injection every 21 – 28 days for a minimum of ten years, and Billi-Joh has been told by doctors that she will need the injections until she is at least twenty one.

While the monthly injections remain a painful and inconvenient part of Billi-Joh’s life, they are something that she has come to accept.

“Having the injections had both of us in tears at first. It took four people to hold her down. She did not understand the injections were there to help her. But now, she takes herself into the clinic” Belinda says.

Not only does Billi-Joh adhere to her own treatment schedule, she is instrumental in making sure other kids with RHD in her community receive their treatment on time too.

“She has been in positions where younger girls have been diagnosed with RHD, and she has held their hand, taken them in, and gone into the clinics with them. She has been that person to talk to, who is going through the same thing as them.”

As well as the regular injections, once a year Belinda and Billi-Joh make the long trip back to Broome to visit a cardiologist. It’s a long drive via a dirt road, but Billi-Joh knows it’s an important trip she has to make.

Beyond the regular injections and appointments, RHD has impacted Billi-Joh’s life in a range of ways. Her mum says there is no doubt that the disease has held her back at times. She has had to take time off school, and while she refuses to let the disease get in the way of playing football and basketball, she struggles at times and can tire easily.

But her mum says she is a ray of sunshine despite the challenges she faces living with RHD.

“She is a beautiful young girl who has her health in mind. She gets down like any other teenager, but looks forward to every day.”

Billi-Joh loves school, and her mum says she wants to be a counsellor or psychologist when she finishes school – so she can continue to help other children living with RHD.

Join the Movement to END RHD

Together with governments, community groups and people like you, we’re coming together to amplify the voices of those living with rheumatic heart disease, and formulating a plan to end it.