Type 1 diabetic and former Director of Youth at Diabetes NZ
I was diagnosed with Type 1 diabetes when I was 14 years old, half way through my Fifth Form year (Year 11) at college. Fast forward 22 years and here I am!
It certainly hasn’t been easy and just when we think we have a grasp of living with Type 1 diabetes it pulls the mat from under us and we come crashing down. I say ‘we’ because anyone who has loved a Type 1 diabetic knows that this disease affects not just the person diagnosed, but everyone around them.
Type 1 diabetes is one of the most common chronic diseases of childhood. Close to 25,000 children and adults live with Type 1 diabetes in New Zealand, all requiring multiple insulin injections every day to survive.
The first few years that followed my diagnosis are a blur. I don’t think I truly understood the enormity of this disease and the complications I could face if I didn’t take care of myself.
Luckily, I managed to make it through my teenage years relatively unscathed with only a few diabetes mishaps. From the outside I was like any other teenager, however I was admitted to hospital a number of times because of extreme hypos or ketones. On one visit, I was admitted to the Intensive Care Unit (ICU). I can only imagine what this time was like for my parents. I certainly wasn’t a rebellious kid, but like all teenagers I’d try things and push the boundaries to work out who I was.
Since then I’ve travelled the world, worked in various different roles, become a mum and continue to do all I can to ensure I am more than my diabetes diagnosis.
There are no days off with Type 1 diabetes. It is relentless. 24 hours a day, 7 days a week I have to test, inject, count carbs and correct. If I get it wrong the consequences could be fatal.
Rightly or wrongly, when I’m asked how my diabetes is going, I normally say “fine”. But if I’m truly honest it’s hard, and often exhausting. Despite doing everything my diabetes team tell me to do, sometimes my blood sugars have a mind of their own.
Medical science will tell you that intensive diabetes management will reduce your risk of long term complications. That means closely monitoring your blood glucose, and administering insulin either through multiple daily injections, or by using an insulin pump.
Insulin pumps are publicly funded in New Zealand but only if you fit a special criteria. The uptake varies greatly depending on ethnicity, degree of deprivation, DHB, age and gender. This exacerbates the health inequities in Aotearoa.
Insulin pumps are an important tool in diabetes management. Yet the current Pharmac funding criteria disadvantages those with less healthy control, and this contributes to disparity and inequity. This is so frustrating because people who struggle with the burden of diabetes have the most to gain from this technology
Throughout the developed world, Type 1 diabetics use publicly funded ‘Continuous Glucose Monitors’ (CGMs) to help manage their diabetes. They are not funded in New Zealand. The vast majority of us will never experience the benefit of this life saving technology which alerts people when their sugar levels are dangerously low or high.
A Continuous Glucose Monitor (CGM) is able to predict what will happen and alert the individual, their parents, their teacher or their partner if their blood sugars are out of range and life threatening. This provides peace of mind, confidence and improved control for people living with Type 1, and their entire whānau.
A mothers perspective: “Having a CGM for our seven-year old son has changed his life and ours. He is having far less painful prick tests, he’s less upset and we have been able to manage his levels far easier with the increased information. It literally saved his life one night when it identified a massive drop which we could treat before he fell into a deeper sleep. He’s able to focus more on his education without the huge interruption of having to do finger prick tests all the time. We’re all finally getting more sleep – I can’t put into words how wonderful it is to have access to this life saving and life changing device.”
It shouldn’t be a luxury to live well with diabetes in NZ.
Living with diabetes is tough. It certainly takes a team of friends, family and experts to master this disease.
The sooner New Zealanders have access to life changing, life-saving diabetes technology, the sooner we can thrive with diabetes, reducing the pressure on our health and well-being, the health system and our families.