A SOUTH Guildford mother is calling for better education after her daughter’s sore throat and fever developed into life-threatening rheumatic heart disease (RHD) and Sydenham chorea, leaving her permanently disabled.
Noongar mum-of-three Megan Hill said despite repeated visits to the doctor, Talarah (16) was not diagnosed with rheumatic fever, the precursor to RHD, which is 100 per cent preventable when treated with antibiotics.
Left untreated, rheumatic fever can damage the heart valves, lead to severe disability and often death in children.
“In the middle of 2015 Talarah had a sore throat, ear infection and fever, so I took her to the doctor and was told to give her Panadol,” she said.
“As the weeks and months went by, she was getting worse with psychological and mobility problems.
“The doctors kept saying nothing was wrong.”
When her daughter collapsed at a shopping centre and was unable to walk, Ms Hill knew something was seriously wrong.
“Her symptoms were so bad in November 2015, that doctors suggested she might have cerebral palsy or brain cancer,” she said.
“It wasn’t until six months after her symptoms appeared a doctor at Princess Margaret Hospital recognised the signs of RHD.”
Ms Hill said it was a shocking and scary diagnosis, which plagued mostly Aboriginal kids.
“What I know now is that RHD is caused by an abnormal immune reaction to a strep A infection, which is basically a sore throat and fever and can be easily treated with penicillin before it damages the heart,” she said.
“If Talarah was given antibiotics when she first went to the doctor none of this would have happened.”
Ms Hill said the disease had taken its toll on Talarah.
“She is in a wheelchair and unable to shower, go to the toilet or dress herself,” she said.
“She can’t go to school or even hold a pen.
“She has a team of health professionals from neurologists to cardiologists to dieticians, takes five different medications every day and needs painful bicillin injections every 28 days until she is 35.”
Ms Hill said she was a strong advocate for better education on the disease.
“My daughter is paying the ultimate price for falling through the cracks of our medical system,” she said.
“There are many families out there with no knowledge of these horrible conditions which is basically extinct in first world countries except for Australia.
“I want to use my knowledge and research to completely end RHD.”
WA statistics show there are 99 people in the greater Perth metropolitan region who are listed on the Rheumatic Heart Disease register.
Indigenous Health Minister Ken Wyatt has met with the family and said his heart went out to them for the challenges they face.
“While RHD affects children and young adults around the world, in Australia it is a sad reflection of the health gap between Indigenous and non-Indigenous children,” he said.
“Our government has made a significant investment in RHD prevention across WA, South Australia, the Northern Territory and Queensland, allocating $23.6 million under the Rheumatic Fever Strategy over the next four years,” he said.
“The charting of Australia’s first comprehensive roadmap to end RHD is underway, following a roundtable of experts I convened earlier this year.
“The roadmap will help guide the way forward, including the required education and awareness across all communities.”
- More than 250 cases of acute rheumatic fever each year in Australia.
- People aged 5-15 years are at highest risk.
- Up to 150 people die each year from RHD.
- Aboriginal youth are 55 times more likely to die of RHD .
- The average age of death from RHD in Aboriginal people is 40 years.