It started with ‘...lumps on my face, tongue, lips, nose, ears’ - South Auckland woman lives with an incurable chronic disease
Public Interest Journalism funded through NZ On Air
South Auckland woman Vania Tutainu’umā Lale Peteru-Bunyali lives life to the fullest the best she can, knowing the chronic disease she has does not have a cure.
But there is a mantra she lives by: “I have lupus. Lupus doesn’t have me.”
The official name for the disease is Systemic lupus erythematosus and is the most common type of lupus. It is an autoimmune disease that results in the immune system attacking its own tissues, causing widespread inflammation and organ damage.
It affects a person’s joints, skin, brain, lungs, kidneys and blood vessels. Lupus has no cure, but lifestyle and medical interventions can help.
The 39-year-old Māngere resident is a member of one of Samoa’s and the Pacific’s most popular and celebrated family bands - Punialava’a - started by her father, Rev Iosefa Lale Peteru, in the 1970s.
Lale Peteru-Bunyali and her siblings grew up carrying on the family tradition by singing, performing and recording their father’s songs alongside their parents, including mum Vini Lale Peteru.
Born and raised in Samoa, Lale Peteru-Bunyali and her family moved to New Zealand in 2004. It would be years later when she would be officially diagnosed as having lupus.
”I remember the first thing I ever experienced that was never explained properly was when I was 13. I feel Lupus has been dormant and has been sitting there, but it has come out now.”
‘I had lumps on my face, tongue, lips, nose, ears’
In Samoa, Lale Peteru-Bunyali and her mother sought the advice of their local physician, who informed them that she had never seen anything like it before.
“I had all these lumps on my face - my eyes, tongue, lips, nose and ears were swollen. It was the day we had kilikiti (Samoan cricket) in the sun.”
Symptoms for the singer only really started to become obvious in 2018 - a year before she was diagnosed. The symptoms were so severe that at one point, she coughed and passed out.
During a tour with the family band in Samoa that year, she was hospitalised.
“I was crying not because I was sick, but because of my parents’ love and support for me. I was sick in the bathroom and [they] came in.
“I didn’t want them to see me like this. But my dad said: ‘No...when you are sick, I am here’. He picked me up and put me in the shower.”
Lale Peteru-Bunyali’s symptoms include joint, skin, heart and pulmonary pain. She has to take regular medication to prevent ongoing headaches.
“I know sometimes it takes a toll, and I don’t like being a burden. ‘I have lupus. Lupus doesn’t have me’ was the motto I said when I was diagnosed.”
In 2019 and the previous year, she received chemotherapy infusion. Her kidneys were functioning at 30 to 39 per cent, she says.
Hopes of being a mum
Initially, Lale-Peteru refused the treatment because of the risk it could affect fertility. She expresses her want to start a family with her husband Cliff Bunyali, who has been a huge support for her.
“It was hard. All I ever wanted was to be a mum. I’ve had the treatment twice and I would rather endure all of this and be able to have children.”
Despite it all, she sees this as a blessing in her life as she acknowledges the support she has received from her aiga.
”Being diagnosed with an incurable disease like lupus, for me, has not been a curse but a blessing. I never learned how strong I was until I got sick.
”I’m a strong believer in things happening for a reason and they’ve happened at the moment they’ve happened for me.”
The singer says she hopes Pasifika and Māori received more attention in the health sector and that their issues were brought to light more often.
Hero image: Vania Tutainu'uma Lale Peteru-Bunyali is a member of celebrated Samoan band Punialava'a. Photo / Brett Phibbs