Trainee doctors are often told: “When you hear hoofbeats, think horses, not zebras”  –  meaning, first consider the more common, more likely diagnosis for any condition.
But what if you’re suffering from an exceedingly rare disease that goes undiagnosed for nearly a decade?
Local dance instructor Zoey Sweeney is one such person to find herself in that predicament. She was finally detected with neuroendocrine cancer.
So her studio, Orana Dance Centre, is this week holding a fundraiser to highlight awareness of the disease.
Zoey’s special ‘Zebra Week’ event involves her dancers and their families training in the zebra-striped black-and-white designs that are the promotional colours and patterns of the Neuroendocrine Cancer Australia support group.
“We do it every year, it’s a week of dress-up in black-and-white or zebra prints,” Zoey explained. “It starts on Monday and goes throughout the week, and we have every student in the school involved,” she added.
Young and healthy, Zoey’s long journey to her final heart-breaking discovery, like many with her condition, followed years of doctors looking for more-common health ailments.
“I was finally diagnosed about two weeks after I bought the studio in 2019. Buying the studio became a great distraction from my diagnosis and a way to escape and forget about my medical issues,” she says philosophically.
“Looking back, I probably had it at 18, when I was diagnosed with what the doctors thought was appendicitis, and then gastroenteritis, but it’s almost always misdiagnosed as ‘irritable bowel syndrome’, ‘menopause’, ‘diabetes’, or ‘anxiety’.”
Treating the symptoms, she found that her condition simply didn’t improve, with suggestions that her continued health decline was lifestyle-related.
“I was told I needed to look at what I was eating, I tried gluten-free, lactose-free, I was down to almost eating rice only; but flushing would cover my entire body immediately after I ate.
“I was told it may be anxiety; 60 per cent of sufferers are in the advanced stage before diagnosis, that’s the reason behind the zebra imagery, because doctors always think of ‘horses’ (common causes) first.”
An exceedingly rare disease whose appearance and frequency has no apparent rhyme or reason, it was, in the end, a lucky ‘mistake’ by a health professional that finally helped pin-point the problem.
“I don’t drink, I don’t smoke, I eat healthy; I love dance, ever since I was about five, it’s very random, there’s no history of any such type of condition in my family, ever,” Zoey emphasised.
“I went for an ultrasound and the operator accidentally moved the probe too high, and said ‘Woah, what’s that mass in your liver?’ So, in the end, it was found purely by accident.”
Untreatable by traditional medical methods, Zoey’s prognosis has improved with injections that have stabilised her disease.
“I was undergoing monthly injections of Lanreotide at the Western Cancer Centre. I’ve also travelled to Sydney for Lutate therapy in 2020 and 2021, and my condition is now stable; I feel pretty good, but the fatigue is the worst,” the busy mother of two primary school-aged girls, said.
This, she adds, is why her fundraiser for Neuroendocrine Cancer Australia, is so vital.
“They do so much good, they have counsellors, nurses, other support, they do some really important work,” Zoey said.
“We’ve raised a few hundred in previous years, if we got to $500, that would be great!”
To give to Zoey’s fundraiser, just donate using your phone with the QR code printed above.