How looking into her family tree helped to save a young mother's life

Otago lecturer Karyn Paringatai's life-changing discovery of her family history has driven her efforts for others to know their roots. Photo / Supplied

It is quite possible that if Dr Karyn Paringatai had not started delving into her whakapapa, she would not be around to advocate for greater awareness of stomach cancer.

Like many New Zealanders, Paringatai knew little, if anything, about stomach cancer; let alone that the overall rate of the disease among Māori and Pasifika is 62 per cent - three times the overall national prevalence rate.

Then her cousin fell ill.

"The gene was only discovered 25 years ago and, in my own whānau, it was probably about 14 years ago that we became aware of stomach cancer within our whānau," Paringatai, an associate professor at the school of Māori, Pacific and Indigenous Studies, said.

"My cousin presented to her doctor with stomach complaints. She had just had a baby and the doctors put it down to reflux.

"But it turned out to be stomach cancer and I think if they had just probed into her family history a bit more, or if she had known a bit more of her family history, they would have realised that stomach cancer ran through her family."

The prognosis for anyone diagnosed with stomach cancer is not promising. Only a third of patients live more than five years after diagnosis.

Many Māori have inherited the CDH1 gene mutation which can cause the cancer, a deadly legacy which means someone has an 85 per cent chance of developing the disease.

Paringatai's fellow stomach cancer awareness advocate, entertainer Stan Walker, has lost 25 members of his whānau to mutations of the CDH1 gene.

Before her cousin died, members of the McLeod whānau - the family whose history of illness helped lead Otago geneticists to discover the CDH1 mutation - promised that they would not let the same thing happen to her children.

That promise led to a Paringatai family reunion, where many of the whānau, including Paringatai, were tested and found to have CDH1.

Learning to live without a stomach

There is a drastic solution which she and others have successfully adopted -having their stomach removed.

A radical gastrectomy has a high success rate in staving off cancer, but it does come with considerable readjustments to lifestyle and diet.

People can still digest food, but do not have a stomach to help do so.

For Māori patients such as Paringatai, there is also a need to reconsider some aspects of cultural practice, given that kai is a central part of te ao Māori.

"You have to learn how to trust your body and discover what you can and can't stomach, so to speak. It took a good one or two years before I was comfortable eating out in public.

"Everything we do revolves around kai, so that involved a lot of understanding from people and raising awareness. You have to lower people's expectations about feeding you up."

Paringatai had her operation 12 years ago, a year after learning of her genetic status.

She is still going strong and now has two children.

"If I don't raise awareness about the gene, about surgical options, about Māori interactions with the health system and how that needs to be better, it is my kids' future at stake, really.

"It is personal, but that is part and parcel of being a Māori researcher."

She is now leading a study on the life-saving benefits of reconnecting with whānau and whakapapa, something she just needs to look in the mirror to find proof of.

"I grew up in Invercargill, away from my iwi and my whānau. But my knowledge of that is the very reason why I am still alive.

"If I didn't know who I was, my whakapapa, who I stemmed from and the connections and relations that my whakapapa informs me, then I wouldn't know that this gene existed and I wouldn't have had the opportunity to have this operation and save my life."

Otago Daily Times