Kiana Harrison lost 12 kilograms before being diagnosed with type 1 diabetes at the age of 7.
Her mother, Faith Harrison, is calling for more awareness and funding for real-time continuous glucose monitoring devices.
Harrison and her daughter, now 10, took part in a hui where whānau living with diabetes, community groups, and health experts met to discuss what research is needed to fill crucial information gaps and, ultimately, improve outcomes for young people with diabetes.
Harrison said there is a lack of understanding around type 1 diabetes, and no funding for life-changing and life-saving technology.
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“I didn’t know anything about type 1 diabetes and immediately thought ‘Oh no what have I done wrong?’,” she said.
“But it is just one of those unfortunate things that just happened to her. It wasn’t her lifestyle, but still most people think it is.”
Kiana had severe tummy pain and constipation, losing 12kg in six months before she was diagnosed.
“She had constantly sore tummies and I had to keep her home from school because she would be screaming in pain,” she said.
The hui, held last month, was the first project for Research for Children Aotearoa, a collaboration led by Christchurch’s Te Papa Hauora Health Precinct including researchers from the universities of Canterbury and Otago, the Pasifika Medical Association, and Ngāi Tūāhuriri.
Harrison said it was valuable for her to get around the table with all the professionals at the Christchurch hui where she supported calls for more awareness and funding for glucose monitors.
The monitors are the size of a mobile phone and operate via a small sensor which is attached to a patient’s arm allowing a person to track their glucose levels.Continuous monitors which set off an alarm if limits are exceeded cost about $400 a month. Real-time monitors which automatically deliver insulin doses cost about $4000 a year in New Zealand, but are fully funded in Australia and the UK.
Kiana has a flash monitoring system, which is cheaper at $200 a month, but it does not have an alarm and her glucose measurements need to be scanned every eight hours.
“It’s expensive, but she’s my daughter and I would give up anything for her, and I’m lucky to have family support. She still has a lot of finger pricks but she manages quite well. She’s amazing. I just give her so much credit,” she said.
“It’s shit but we manage. We have to. It’s just our new normal.”
Dr Martin de Bock, a paediatrician and researcher specialising in childhood diabetes, said the most common symptoms of diabetes were unexplained weight loss, thirst and frequent urination, which could lead to constipation.
He said families at the hui raised the issue of stigma caused by people not understanding the difference between type 1 diabetes and type 2, which for many people, but not all, can be prevented through following a healthy lifestyle.
He said young New Zealanders were being denied access to life-saving technology.
”It’s got to stop. For people with real-time continuous monitors they are four times more likely to have healthy glucose numbers which is a substantial dramatic change.”
Having healthy glucose levels will prevent people from getting serious life-threatening complications like kidney and heart problems, blindness and loss of circulation, he said.
Te Papa Hauora independent chairperson Peter Townsend said the hui was Research for Children Aotearoa’s first ground-breaking collaboration to “supercharge” children’s health, wellbeing and education.
He said world-class university researchers were working with Māori and Pasifika organisations to improve outcomes for children.
It had plans to bring educational experts, speech-language therapists and psychologists together to work with child medical specialists and the involvement of Ngāi Tūāhuriri and The Pacific Medical Association would ensure the group’s mahi helps improve equity and meets the needs of a diverse community, he said.
Professor Gail Gillon (Ngāi Tahu) who heads the University of Canterbury’s child well-being research institute said the government-funded research programme was focused on ensuring all young children have a successful start to life.
“Aotearoa New Zealand has a strategy to make it the best place in the world for children to live. That’s a challenging task involving complex issues so we need a trans-disciplinary response,” she said.
Amber Clarke, who represents Ngāi Tūāhuriri as part of the Research for Children Aotearoa, said a range of voices needed to be heard to improve outcomes for communities.
“We have the opportunity to really transform the lives of tamariki and their whānau. How do we do that? We start to listen. We allow communities, whānau and tamariki to define what their aspirations and needs are.”
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