DANIELLE CLENT / STUFF
Unicorn Foundation The NZ Siobhan Conroy Foundation carries a genetic mutation that causes the growth of tumor tumors.
Siobhan Conroy will develop tumors during his life – but he sees this knowledge as a blessing.
The central resident of Auckland discovered at the age of 25 that she and her three brothers all inherited the genetic mutation that caused neuroendocrine cancer (NET cancer).
All four siblings inherited the gene from their father who died of a disease at the age of 44 when Conroy was only 3 years old.
"It's a 50 percent chance of succession each time and unfortunately we all have inherited four of us, which is quite unfortunate," said Conroy.
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40 years old had parathyroid tumors that had been eliminated from her neck when she was 25 years old. Since the glands regulate the amount of calcium and vitamin D throughout the body, it has been recovered in the forearm.
In 2010, the pancreas was removed because there was another NET tumor there. She chose her in the hope that the cancer did not spread.
"It was not so grateful that I did it because maybe I was not here if I did not know it," said Conroy.
"That's where I see my situation, I'm so lucky, because who knows I would not be alive now if it were not removed."
He is the Executive Director of the Unicorn Foundation NZ, the only organization in the country, specifically for patients with NET cancer.
"This man was somehow forgotten cancer," said Conroy.
It takes about five years to diagnose cancer on average, and when the patient finds out what she's suffering from, she's upset, she said.
"They will be angry and upset and just frustrated, because at that time they would have been several times with their doctor.
"They are people who are actively seeking help, but they are not diagnosed with the thing that really causes problems."
NET cancer could arise in any part of the body but was more common in the digestive system or in the lung, she said.
Apple co-founder Steve Jobs and singer Aretha Franklin have died of NET cancer.
Conroy said she founded the foundation of "frustration" six years ago that there is a lack of information about "special cancer".
It has rebutted the view that cancer is rare because it has more than 2,000 kiwi and has been diagnosed every day.
But Conroy said it was a difficult disease because there was not just one test available.
The organization celebrated NET Day on Saturday to raise awareness.
Conroy said the organization is working with researchers to develop a blood test that would diagnose NET cancer.