800,000 Australians With POTS Face Diagnosis Crisis as Rural Patients Struggle

About 800,000 Australians live with postural orthostatic tachycardia syndrome (POTS), a condition that disrupts heart rate, breathing, and digestion, yet fewer than 2% of general practitioners have received training in its diagnosis or treatment. Rural patients face the steepest barriers: one 15-year-old from Keith in South Australia spent 2.5 years bedridden before diagnosis, forcing her family to travel 225 kilometres to Adelaide for specialist care. Women aged 15 to 50 are at far higher risk than men, but the condition remains poorly understood across Australia’s healthcare system.

What is POTS and who does it affect

POTS affects the autonomic nervous system, which controls heart rate, breathing, and digestion. The Australian POTS Foundation reports that people aged 15 to 50 are most likely to develop it, with women at significantly higher risk than men. Symptoms include drops in blood pressure and severe fatigue. Piper Makin, then 15, experienced such debilitating fatigue that she spent days in bed and needed a wheelchair, despite previously balancing school, weekend netball, and farm work.

The diagnosis and training gap

A national survey of more than 2,000 Australian general practitioners found that only 2% had received training in POTS diagnosis or treatment. Marie-Claire Seeley, senior research fellow at the Rosemary Bryant AO Research Centre, said research into POTS had been limited, leaving patients and families without answers. A 20-year follow-up study found that only 2% of POTS patients recovered, contradicting the belief that young women outgrow the condition.

Rural patients face distance and cost barriers

Piper Makin’s family in Keith, South Australia, found knowledge of POTS scarce in their regional community. After local doctors could not identify her condition, the family travelled 225 kilometres to Adelaide to see a specialist. They underwent six weeks of intravenous injection therapy, a process Piper’s mother Kylie described as expensive and mentally draining. Rural residents may find it difficult to access diagnosis and treatment due to distance and cost.

The invisible illness and delayed recognition

Piper said the condition was difficult to explain because people could not see her symptoms. Her mother Kylie began documenting her daughter’s experience on Facebook to seek information and connections. After formal diagnosis, Piper has returned to school and netball, though managing POTS involves periods of improvement and regression. The lack of GP training means many patients spend years seeking answers before reaching a specialist who recognises the condition.

Final Thoughts

With 800,000 Australians living with POTS and only 2% of GPs trained to diagnose it, the healthcare system faces a significant gap. Rural patients bear the heaviest burden, forced to travel hundreds of kilometres and pay for expensive treatments. Urgent investment in GP training and regional specialist access is needed.

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