How Ngak Min Health is tackling Rheumatic Heart Disease with plenty heart of its own
"I'm used to getting needles now, it doesn't hurt – it tickles.”
Djarragun College student Kaissia Dick is with Ngak Min Health’s Aboriginal Health Worker and Registered Nurse, Jayrahni Nicholls to receive her monthly Bicillin injection. Something she has had every 21 days since the age of four.
Kaissia has Rheumatic Heart Disease (RHD) and receives Bicillin to prevent her joints from becoming swollen and pained or an Acute Rheumatic Fever (RHF) episode that would further damage her heart.
In 2018, there were 478 newly diagnosed cases of ARF. Of these, 96% were First Nations Australians (AIHW 2020). More than half of the people with an ARF episode progress to RHD within 10 years, and more than one-third develop severe RHD. The risk of death from RHD in Aboriginal and Torres Strait Islander communities is 20 times that of Australians in the general population with two children passing away every week to RHD.
“It’s 100% preventable. It can start when you have a sore that becomes infected or a sore throat that has the bug called streptococcus,” Jayrahni explains. “If left untreated, the recurrence of this infection and Acute Rheumatic Fever will make your heart sicker and sicker. Then you might go to the doctor and they notice that a valve in your heart is leaking because of all the damage it has taken from the Strep A. This leads to being diagnosed with Rheumatic Heart Disease.”
While the disease is something that will always be with Kaissia, she remains a vibrant, happy teenager who loves school and art.
"I love painting and spending time with my art teacher," Kaissia says. "Doing art makes me feel calm.”
Her mum Deidre Gordon has seven children, all of whom have walked through the halls of Djarragun College.
“The five eldest graduated from Djarragun College, it's just the two youngest left now," says Deidre. "Sometimes it gets too peaceful at home. I knock on their doors, to make sure I have children in the house or I turn the wifi off, so they come out of their rooms," Deidre says with a laugh.
Luckily for Kaissia, Ngak Min Health's dedicated team is only a short walk away from class. The location of Ngak Min Health’s clinic on the Djarragun College campus helps ensure that Kaissia and another 20 students receive their monthly Bicillin injections on time and in a comfortable environment, with an Indigenous-led team.
"I like Ngak Min because I can walk here from class," says Kaissia.
"The kids don't like missing out on school when they have to travel to go to the doctor,” Deidre adds. “I find it easier for them to go to the doctor at school. I think she's best friends with Jayrahni here.”
“The students see me as their big sister,” Jayrahni says. “So I try and make them realise that their health is important. I educate them to look after themselves and take that knowledge back to their communities. A lot of these kids have never been to a health service or seen a doctor. It’s amazing to see these kids get the help they need while at school.”
When it comes to receiving their monthly Bicillin injections Jayrahni says every kid is different.
“Some see the needle and don’t worry. For other students, it can take nearly an hour to give them their injection,” Jayrahni says. “Some I give numbing creams to make it less painful others I bribe with Tim-Tams, which seems to work most of the time.”
For Deidre, she remembers the morning she knew something wasn’t right with Kaissia.
"During the school holidays I go home to Mossman and visit my sister, to have our children together," says Deidre. "One morning, Kaissia woke up and couldn't get out of bed. And I thought to myself, 'Oh no, not another one'. Because my oldest boy, who was sitting outside, he has rheumatic heart disease as well."
Ngak Min Health General Manager, Charmaine Nicholls, says the school holidays are a nervous time for the clinic because many boarding students with RHD don’t have easy access to their medication.
“When students come back to school, most of them haven’t had their monthly injections while they’re away. And even scarier, is the Christmas holidays. It’s important for us to work out ways to best support them in their community, so together we can make sure these kids stay healthy.”
Improvements in socioeconomic and environmental conditions can prevent ARF and RHD in communities. Specifically, overcrowded housing and lack of access to washing facilities are strongly associated with higher rates of Strep A infections and ARF. Access to healthcare clinics like Ngak Min is another major factor.
“Some of the students we see have never been to a doctor or health clinic before they started at Djarragun,” Jayrahni says. “My biggest advice is to go for a regular check-up even if there’s nothing wrong. And you know your children best. Once you start seeing those symptoms [skin sores or sore throat] go and see your doctor as soon as possible.
“If you have been diagnosed with RHD, keep up your monthly Bicillin injections because that’s what will keep you off the operating table and help you live a longer happier life. Even though it is the scariest needle, it’s the one that will make you better.”
It’s clear, Ngak Min Health is at the front line of RHD with hopes of eradicating this debilitating, yet preventable disease. Until then, Jayrahni will keep the Ngak Min fridge stocked with Bicillin and Tim-Tams.