If you've never heard the term diabulimia you're not alone. Many people, including those with diabetes, will be completely unaware of the condition, described as the world's most dangerous eating disorder in a recent BBC3 documentary. Thankfully more and more people are beginning to speak up about their experiences of diabulimia, and the impact it has had, but despite the increasing awareness, many people with the condition can struggle to get the right care and support.
Diabulimia is not currently a recognised either as a medical, term or a psychiatric condition in its own right, but the term diabulimia, which merges the words 'diabetes' and 'bulimia', is generally used to describe the situation where somebody deliberately and regularly restricts the amount of insulin they take due to concerns over their body weight.
The long-term impacts of habitual insulin omission are severe high blood glucose levels - known as hyperglycaemia - and weight loss, which occurs as the body starts to break down its fat and muscle in order to get energy.
It is difficult to estimate the number of people with diabulimia. However, estimates of insulin omission have been reported in up to 40% of people living with Type 1 diabetes. And it's not just women who are affected. Research also shows that men with Type 1 diabetes have a higher drive for thinness, which is recognised as a key driving factor in the development of an eating disorder.
There are a number of reasons why people develop diabulimia and its consequences are severe and far-reaching. People with diabulimia are putting their health - and even their lives - at very real risk. Research shows that people who don't give themselves enough insulin over a long period of time have a much shorter life span, and go on to develop severe complications linked to diabetes including blindness and foot problems at a much earlier stage. In those cases where a person's diabulimia leads to severe diabetic ketoacidosis (DKA) - where a severe lack of insulin leads to extremely high blood glucose levels causing serious illness- heart and organ failure can occur, hich can be fatal. With the right help and support, however, diabulimia can be overcome. But early intervention and quick access to specialist support is crucial. But sadly, despite the severity of the condition, and growing awareness among the medical community, people with diabulimia still often struggle to get the vital care and support they need.
We want to change this, which is why we are calling for action across the UK to improve clinical recognition and management of diabulimia. Earlier this year we updated our Position Statement on this issue, in which we outline what we want to see happen to improve the situation.
We want to see sufficient resources and training being in place to enable diabetes healthcare professionals to identify and support people with diabulimia effectively. Alongside this, healthcare professionals need to be aware of the possible signs of diabulimia, and must ensure people with the condition are referred to specialist support without delay.
Friends and family can also provide support to someone living with diabulimia, so it's really important that there is greater awareness of key signs of the condition, and that parents, friends and carers know what to look out for. These can include fluctuation in weight, repeat admittance to hospital with high blood glucose levels, and secrecy over injecting.
Awareness of the diabulima, and routine access to appropriate treatment must be improved as a matter of urgency in order to reduce the number of people who develop serious complications, and a severely reduced quality of life due to their condition.
Libby Dowling is a senior clinical advisor at Diabetes UK