Danil Clint / Stoff
Unicorn NZ CEO Siobhan Conroy carries a genetic mutation that causes cancerous tumors to grow.
Sevan Conroy will develop tumors during her lifetime – but she sees this knowledge as a blessing.
A resident of Auckland Central discovered at the age of 25 that she and her three siblings inherited a genetic mutation that caused neuroendocrine cancer.
All four brothers inherited the gene from their father who died of an illness at the age of 44, when Conroy was only three years old.
"It's 50 percent chance to inherit at a time and unfortunately all four of us have inherited it and that's unfortunate," Conroy said.
Read more: Relief for those suffering from neuroendocrine cancer after a decision by Pharmacokin * Neuroendocrine patients suffering from cancer are taking on pharmacokine * Charity cancer "jumps up and down" to receive NZ treatment
For 40 years, there were parathyroid tumors removed from her neck at the age of 25. As the glands regulate the amount of calcium and vitamin D throughout the body, she had one implant in her mother.
In 2010, her pancreas is removed as another NET growing there. She took it out in the hope that the cancer had not spread.
"It was not that I was so grateful that I did it because I could not be here if I did not know," Conroy said.
"Here I see my situation, I'm lucky, because who knows, maybe I would not be alive now if it was not spent."
She is the principal of Unicorn Foundation NZ, the only organization in Israel specifically for cancer patients and net.
"It was a forgotten cancer in a sense," Conroy said.
On average, it took about five years to diagnose the cancer and when the patient finds out what they are suffering, they are angry, she said.
"They will be angry and upset and just frustrated, because during that time they would come to their doctor several times.
"These are people who are actively trying to get help, but they are not diagnosed with what actually causes problems."
Net cancer can occur in any part of the body, but was more common in the digestive system or lungs, she said.
Apple founder Steve Jobs and singer Aretha Franklin also died of cancer.
Conroy said she founded the fund six years ago out of "frustration" because there is a lack of information about the "strange cancer".
She rejected the idea that the cancer was rarer than 2000 and Kiwis lived with it and another one was diagnosed every day.
But Conroy said it was a difficult cancer to diagnose since there was not only one test available.
The organization celebrated Net Cancer Day on Saturday to raise awareness.
Conroy said the organization was working with researchers to develop a blood test to diagnose cancer.