This new eating disorder is little-known but deadly.

Erin Williams. Image courtesy of ABC News

Meet Erin Williams.

Erin was diagnosed with type 1 diabetes at 11 years old.

Type 1 diabetes means that the pancreas stops making insulin, which means that the body’s cells cannot turn glucose into energy. In order to stay alive, those with type 1 diabetes must have up to four insulin injections daily.

They must also test their blood glucose levels several times during the day. This type of diabetes can occur at any age and cannot be prevented.

By the Erin she was 14, she was tired of the endless insulin shots and the strict diets she was forced to stick to. She was tired of saying no to cake and soft drinks at birthday parties. She was tired of being different to her classmates.

And so one day, she simply decided to stop taking her insulin.

When she woke up the next morning, she felt fine. Nothing drastic happened to her health overnight. Encouraged by this result, Erin continued to restrict her insulin intake and ate pretty much whatever she wanted.

Without the required amount of insulin to process glucose, Erin’s body began to burn through fat and muscle.

She lost weight.

A lot of weight.

And her classmates and family friends began commenting on her weight loss; telling her that she looked fantastic. Encouraged by the comments, Erin continued to skip the daily doses of insulin that were prescribed to keep her alive.

With her blood sugar levels running so high, Erin became fatigued and often fell asleep in class. She also became constantly dehydrated, due to her body trying to flush sugar through her urine. By the time Erin hit the age of 24, she had osteoporosis (a disease of the bones which makes them more fragile than normal).

She walked around on a shattered and infected ankle for two months before she even realised something was wrong – she hadn’t felt anything due to nerve damage.

Erin had developed an eating disorder, which barely anyone is familiar with: It’s called diabulimia. And it’s what happens when you combine Type 1 diabetes and the practise of withholding insulin to lose weight.

Diabulimia – what happens when Type 1 diabetics withhold insulin.

The health consequences are disastrous. Short-term complications include dehydration, fatigue and irritability. Long-term complications can be everything from blindness to nerve disorders and kidney failure.

And Erin was not the only one suffering. There are no real statistics that show exactly how many people suffer from diabulimia, but previous studies suggest that it is alarmingly common amongst diabetics.

Data reported by the BBC reveals that 8000 diabetics in the UK are hospitalised each year because they weren’t getting enough insulin. And the a high proportion of those are young women. The reason for their lack of insulin? Not access, not money, not forgetfulness but a deliberate intention to lose weight.

While there are no relevant studies that have taken place in Australia that we could get our hands on, studies out of Canada paint a similarly disturbing picture. According to the University of Toronto, teenage girls who suffer from type 1 diabetes are more than TWICE as likely to have an eating disorder than those who aren’t diabetic. Earlier research suggests that close to a third of diabetic women will skip their injections in an attempt to shed some kilos at least once in their lives.

And as ABC news explains, diabulimia is terrifyingly easy to hide:

When [Williams] went to the doctor with high blood sugar levels, she made up excuses that she had forgotten to take her insulin or that she had injected it improperly… Her other symptoms of fatigue and irritability could be explained as the normal behavior of a teenager.

Once diabulimia is actually diagnosed, recovery can be an exceptionally difficult process. Erin has written about the added challenges for diabetics recovering from eating disorders on her website, We Are Diabetics:

Recovering from diabulimia is never easy. While it is already a challenge to recover from any type of eating disorder, type 1 diabetics suffering from diabulimia offer even more of a challenge for treatment facilities because the patient must be treated from both a traditional method focusing on therapy and self-acceptance and from a medical standpoint.

A type 1 diabetic will always have to be very aware of food and its nutritional content and needs constant blood sugar level monitoring. In order for someone with type 1 diabetes to accept the help and recovery that a treatment center offers there must be a well trained and educated staff that not only have an understanding of someone suffering from an eating disorder but have an understanding of the hundreds of factors that a person with type 1 diabetes must consider when eating a meal or taking an insulin injection.

Adolescent girls with diabetes are 2.4 times more likely to suffer from an eating disorder.

There are a few eating disorders which we are all-too-familiar with.

We know about bulimia, we know about anorexia, we know about binge-eating.

These eating disorders are recognised as medical and psychiatric conditions and have treatment plans attached.

But across the world, diabulimia is still a relatively new term and is yet to be recognised as a condition. As a result, it goes largely under-diagnosed and untreated.

If you need help or support you can call the Butterfly Foundation support line on 1800 334 673.

Have you or someone you’re close to ever suffered from an eating disorder?