An under-diagnosed eating disorder has come to light, it’s called diabulimia and it happens when type-one diabetics deliberately avoid taking insulin.
A study has found a third of type-one adolescent diabetics surveyed are at risk of developing a diabetes-related eating disorder.
Beth Wood was eight when she was diagnosed with type-one diabetes. When she was 10 she started to neglect her medication.
“It was the only thing that I had control over.”
She'd recently moved to New Zealand from the United Kingdom. A big move for an eight-year-old. She found it stressful.
She was called lazy for not taking her medication, but no one asked her what was wrong.
She says what she really needed was more support, monitoring of her medication and counselling.
Professor Paul Hofman led the study that surveyed 300 young people between the age of 12 and 25.
He found a third are at risk of developing a diabetes-related eating disorder.
And he says he was shocked to find that 12-year-olds were in the high risk category.
For Beth, who almost died, the treatment was not pleasant.
Prof Hofman has seen what young people endure first hand and treated them.
"We have to bring them into hospital and force feed them to get their weight up to a level where they start to feel better and have a healthier approach to food and eating.”
He says there is a need for more support services for young people.
Diabetes and Eating Disorders Awareness (DEDA) is the only recognised support group for diabulimia. Community manager Zoe Sole says they need funding and a wider range of resources.
Ms Sole says, "there have been cases where people have died over night from not taking their insulin".
DEDA’s tips are to be stubbornly hopeful, be kind to yourself care for your diabetes and connect with others.
She says, “most often the complications we see are from not taking insulin, it’s a balancing act”.
“For anyone going through diabulimia they are scared to take insulin based on the fact that they can lose weight without it”.
Ms Sole says people are scared to ask for help because there is no help at present.
“There is no specific diabetes and eating disorder clinic at present that is able to deal with both at the same time.
"So the eating disorders will tend to be treated by the eating disorder clinics and diabetes by diabetes specialist,” she says it is a disorder that requires input from both teams.
“Anyone who has had diabetes, even for a short period of time, is at risk.”
It's not just females affected, 25 per cent of high risk respondents were male.
It’s the first time statistics have been collected on diabulimia in New Zealand and the numbers have given rise to concerns about the long term costs.
"It cost this country probably billions of dollars in complications", Professor Hofman said.
Those with poorer control are more likely to “get renal failure and need renal dialysis. They are going to get macro-vascular disease causing heart attacks and strokes, they are going to get eye disease and have issues with vision."
He says the next step is to develop more resources and effective therapies because “there is no point in getting numbers and not doing anything about it”.
For Beth the awareness that this study brings to diabulimia couldn’t come soon enough and she hopes her story will help reduce stigma surrounding eating disorders.
Beth says “mental health is more of an issue than it ever has been. And that runs the risk of people abusing diabulimia and developing a problem".
She manages her medication better now and is hoping this research will lead to better counselling for young diabetics.