Realising she could go blind if she did not control her type 1 diabetes was a shock for Dunedin student Hope Duncan.
Diagnosed at 4, Miss Duncan (21) says she did not monitor her blood levels adequately until a couple of years ago. Previously, dreading hypoglycemia (low blood sugar), she ran her blood glucose levels ''far too high'' to stave off the possibility. But high blood sugar can damage blood vessels.
''I didn't believe really that I had diabetes until I saw on this photograph of my eye that this had popped, and that I needed to take control and do something about it.''
Since then, she has been a close carbohydrate counter, which is necessary to work out how much insulin to take.
''I was like: 'Oh my God, no, I can't lose my sight. That can't happen.
''For me, I needed a wake up call.''
As a teen, she did not want ''a bar'' of initiatives like diabetes camps. Keen to be more involved now, she assists with an adolescent support group at Diabetes Otago.
Being a role model meant practising what she preached.
''I don't have the right to do that unless I'm doing it. That's a big motivation for me.''
She has joined an online movement, Free Diabetes, keeping her in touch with medical advances, and providing an outlet for frustrating aspects of the disease.
As with any online activity, abusive ''trolls'' criticising diabetics were an occupational hazard, and had to be avoided.
The most annoying aspect was people's ignorance about type 1 diabetes. They often assumed the disease was linked with lifestyle, confusing type 1 with type 2 diabetes.
Current events shows on TV often failed to distinguish between the types. She remembers the diagnosis clearly ''because it was so horrible'', and led to drips and injections.
''I remember screaming and screaming about the drips.''
She had been sick for quite some time, and the diagnosis was probably delayed by the fact the family moved to New Zealand from Scotland. The ''huge'' needles were twice as thick as those used now, she remembers.
''When I was younger I was very angry about having diabetes - I didn't think it was fair. I didn't know why I had it. I kind of felt the world was against me. I tried to ignore it. I thought if I ignored it it would go away.''
While treatment methods have improved, the disease's impact on daily life is still considerable. When she leaves the house, Miss Duncan takes muesli bars, a banana, soft drink, dextrose tablets, a blood glucose kit, and insulin.
''That's life. Everybody has different things to deal with and this is my one.''
Her friends tended to be older, and many were in the medical profession. She also had friends her own age, including students at Otago Polytechnic, where she is studying occupational therapy.
Choosing friends carefully was important.
''If people aren't open to the fact you have an illness, well I don't want to be friends with them.''
Diabetes was, in many ways, an ''invisible illness'', making it harder for people to understand.
When she qualifies as an occupational therapist she wants to work ''somewhere like Gore'', as residents in small towns deserved access to the same services as people in bigger centres.
Most of her classmates were unaware of her illness, and she did not want to be treated differently.
''It doesn't stop me from studying or doing placements. It's just that when I do it there's lots more planning on my behalf.''
Her disease would give her empathy dealing with patients - something she experienced positively during her years of dealing with Dunedin health professionals.
She spoke highly of Prof Jim Mann and Prof Barry Taylor. ''Once I had a continuous glucose monitor because my bloods were all over the place ... I didn't want to wear it, so I told Barry [Taylor] I wasn't going to wear it unless he had worn it for a week.
''He went and wore the bloody thing for a week and he said `right, I've done it, go get it on'.''
What is type 1 diabetes?
• People who make no (or very little) insulin because the immune system has destroyed the pancreas.
• Insulin transports glucose from the blood into fat and muscles, where it is used for energy.
• No cure, but can be well controlled.
• Diabetics would die if insulin were not given, and require injections several times a day.
• Glucose is an essential source of energy for the brain as well as a source of energy. Glucose comes from carbohydrate foods, which are changed into glucose after they are eaten.
Source: Diabetes New Zealand
