DANIELLE CLENT / STUFF
Unicorn Foundation NZ strain Siobhan Conroy carries a genetic mutation that causes cancerous tumors to develop.
Siobhan Conroy will develop tumors throughout her life – but she sees this knowledge as a blessing.
The central resident of Auckland discovered at the age of 25 that she and her three brothers inherited a genetic mutation that caused neuroendocrine cancer (NET cancer).
All four siblings inherited the gene from their father who died from the disease at age 44, when Konru was only 3 years old.
"It's a 50 percent chance of inheriting each time and unfortunately all four of us inherited what is quite unlucky," said Kony.
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The age of 40 had parathyroid tumors that had been removed from her neck when she was 25 years old. As the glands adjusted the amount of calcium and vitamin D throughout the body, it had been re-implanted on its forearm.
In 2010, he had removed the pancreas, as another NET volume was developed there. He had taken it in the hope that the cancer had not spread.
"I did not so am so grateful that I did this because I might not be here if I did not know," said Conroy.
"So I see my situation, I'm so lucky I know it, maybe I will not be alive now if it did not come out."
He is the Chief Executive Officer of the Unicorn Foundation NZ, the country's only organization specifically for NET cancer patients.
"This is a forgotten cancer in a way," said Kony.
On average, it took about five years to locate the cancer and once the patient discovers what they are suffering, they are angry, he said.
"They will be angry and upset and just disappointed because at that time they would have gone to their doctor several times.
"These are people who are actively trying to help but are not diagnosed with the thing that really causes the problems."
Pure cancer could arise in any part of the body, but it was more common in the digestive tract or in the lungs, he said.
Both Apple co-founder Steve Jobs and singer Aretha Franklin died of NET cancers.
Conroy said the foundation began six years ago from "disappointment" that there was a lack of information about "peculiar cancer".
He refuted the idea that cancer was rare as more than 2000 kiwis lived with him and another was diagnosed daily.
However, Conroy said it was a difficult cancer for diagnosis, as there was not only one available test.
The organization celebrated NET Day on Saturday to sensitize it.
Mr Conroy said the agency is working with researchers to develop a blood test to diagnose NET cancer.