More women being diagnosed with POTS but rural patients face extra toll
Piper Makin was living the typical life of a rural teenager.
Netball on weekends, high school during the week and helping her parents on the family farm at Keith, in South Australia's South East, was the schedule for the then-15-year-old.
But over a period of months, her energy and health started declining, spending days in bed and using a wheelchair to get around.
After pushing local doctors and hospitals for answers, one simple test showed Piper had postural orthostatic tachycardia syndrome, commonly known as POTS.
"I froze because I was so scared I was never going to be able to do fun things and activities like my sport and netball and all," she said.
As Piper Makin's health worsened, she spent much of her time on the couch and needed a wheelchair to get around. (ABC South East SA: Elsie Adamo)
"It's very hard to explain because people don't know what POTS actually is, so you just kind of have to give like all your symptoms and all of that and what you actually feel.
"I just got this feeling of no-one's ever going to believe me because they can't physically see what I'm going through."
Limited research
POTS is a condition that affects the autonomic nervous system, the system that regulates essential functions such as our heart rate, breathing and digestion.
The Australian POTS Foundation said people between the ages of 15 and 50 are the most likely to develop the condition, with women at a far higher risk than men.
Symptoms are wide-ranging and different in each person, with Piper's including drops in blood pressure and general feelings of fatigue.
"You just want to rest all day, which is what I do," Piper said.
"It's kind of hard because once you rest all day, then you stand up and you feel like s***."
Rosemary Bryant AO Research Centre senior research fellow Marie-Claire Seeley said research on POTS has been limited, which leaves patients and families often without answers.
Marie-Claire Seeley said POTS remained misunderstood despite recent research findings. (ABC News: Brant Cumming)
She said the condition was previously believed to be exclusively for young women who would later "grow out of it".
"That was because they didn't actually follow them for any time," Dr Seeley said.
"But we've just had a 20-year release of a paper where they followed POTS patients for 20 years that showed only 2 per cent recovered."
Dr Seeley said a national survey of more than 2,000 general practitioners across Australia showed only 2 per cent had received any training in POTS diagnosis or treatment.
"They're women in the prime of their life, child-bearing time, work time, education time, who are just being withdrawn from the system silently," she said.
Piper and her mum Kylie Makin fought to find an answer to Piper's medical questions. (ABC South East SA: Elsie Adamo)
"Their families are having to manage the best they can with almost no support from our health system."
Finding community
About 800,000 people live with POTS in Australia, but with Piper living in a small regional community, knowledge of the condition was scarce and she knew no-one else with it.
Her mum Kylie Makin started documenting Piper's journey on Facebook, calling out for information and to raise awareness.
"It's hard because POTS can be so debilitating and even though she looks healthy, and she's such a pretty girl, Piper, it's hard then for people to understand she's so sick," she said.
Kylie Makin took to Facebook to try and better understand Piper's condition. (ABC South East SA: Elsie Adamo)
"I just had another phone call that there is another local girl over towards Bordertown that has POTS.
"So we're going to try and connect our two girls, at least then they can talk and network together and they know what they're feeling."
Kylie said the early days following Piper's diagnosis were both expensive and mentally draining, particularly living about 225 kilometres from Adelaide.
The family managed to find a doctor in Adelaide and started six weeks of intravenous (IV) injection therapy.
"That put a big pressure [on us], especially [when] we were going through the hardest, driest time on the farm," Kylie said.
"Leaving the farm and putting money in to help Piper get her back to where she needed to be."
Managing the future
Piper has been able to return to school and to the netball court, but managing the condition comes with varying bouts of progress and regression.
After treatment helped alleviate her symptoms, she was selected to participate in a netball carnival in Adelaide, but then had to pull out when she experienced a flare-up.
Piper Makin has returned to school and sport, but it means careful management of her symptoms. (ABC South East SA: Elsie Adamo)
Kylie hopes increased visibility of her daughter's condition will help others push for answers when they notice their health declining.
"If I wasn't very active in pushing for Piper, we'd probably still have her in a wheelchair," she said.
"We just don't have the awareness and we just don't have the facilities we can easily get to, so it does just make it tricky."
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