Sticking to Treatment – young Australian turns his rheumatic heart disease experience into a tool to get the message to others

 Usually found only in less developed countries, rheumatic fever incidence and rhematic heart disease prevalence in remote Aboriginal and Torres Strait Islander communities of Northern and Central Australia are some of the highest in the world.  Both are preventable conditions. Young people aged 5 – 15 years are at highest risk of a first episode of rheumatic fever and rheumatic heart disease is most common in adolescents and young adults.

West Australian performance artist Nelson Baker has turned his experience of living with rheumatic heart disease into a powerful video message to other young Australians.

The video ‘Sticking to Treatment’ started with an idea from Janice Forrester at Western Australia’s Rheumatic Heart Disease Control Program. She had heard of Nelson and asked the young Health Promotion Scholarship recipient to give a patient’s perspective at a community awareness-raising event.

Nelson, 21, created ‘Sticking to Treatment’, and now a music video has been released by Goolarri Media for the Western Australia Country Health Service

“Rap is my way of talking to young Indigenous people,” said Nelson. “I never kept a diary, so rap lets me get out what I keep inside. By letting the pain come out you realise you’re not the only one. You don’t know what you have until it’s down on paper. It builds you as a character.”

Rheumatic fever is an illness caused by an autoimmune response to a bacterial infection commonly called the strep bacterium. Rheumatic fever affects the heart and joints and sometimes the brain. Damage to the heart valves may remain or even progress once the ARF has resolved and this damage is known as rheumatic heart disease: a permanent, chronic, and sometimes fatal disease.

The proven, cost effective way to prevent damaging recurrences of rheumatic fever is regular antibiotic injections of benzathine penicillin G (BPG). This must be given by every 28 days for 10 years or until the person is 21 years old – whichever is longer. This means that young people affected need 13 injections each year for at least a decade.  Even one missed injection leaves people vulnerable to repeat episodes of rheumatic fever and further heart valve damage.

“In Sticking to Treatment I’m talking not just to the patient but everyone around them: family and friends, communities and the support sector. RHD dominates every aspect of your life. Things you don’t think will be hard turn out to be hard. It’s always in the back of your head. An injection is normally painless, but a painful one can scare the patient off treatment,” Nelson continued.

Treatment-neglect can beset any teenager, and for Janice the message goes wider than RHD.  “It’s that non-conforming age when you’re rebelling, not engaged,” she said. “This video should be tremendously useful in reaching out to young people in various life struggles towards choices for later on.”

‘Sticking to Treatment’ was launched to community members, friends and family at the Gimme Club in Broome on 22nd June.  The video and more information on rheumatic fever and rheumatic heart disease can be found on the RHDAustralia website at www.rhdaustralia.org.au.

RHDAustralia is National Coordination Unit to support the control of RHD in Australia. RHDAustralia’s aim is to reduce death and disability from rheumatic fever and rheumatic heart disease in Aboriginal and Torres Strait Islander people.