Lisa Day, a 27-year old student nurse from North London, died after waiting nearly five hours for an ambulance in September 2015. Diagnosed with type 1 diabetes as a teenager, she had purposely missed vital insulin jabs in order to lose weight on multiple occasions. But this time, without the crucial hormone to mop up excess sugar in her blood, she had developed life-threatening diabetic ketoacidosis, whereby toxic chemicals build up in the body.
Lisa's story is devastating, but sadly it is far from unique. It's estimated that in the UK, a third of diabetic women between the ages of 15 and 30 are regularly skipping their insulin injections in order to lose weight. Campaigners and doctors in the know call this eating disorder diabulimia, but it is, as yet, an unrecognised disease.
Unlike type 2 diabetes, often caused by lifestyle factors, where the body becomes less responsive to insulin, type 1 happens when the immune system accidentally destroys the cells in the pancreas which produce the hormone. This essential chemical ferries the energy from food around the body. But without it, the symptoms of diabetes appear: frequent urination, dehydration and utter exhaustion. The condition also often results in rapid weight loss.
As type 1 diabetic Jacqueline Allan puts it in a blog post for the Huffington Post:
"Ironically though, particularly if you are female, people start telling you how good you look, they ask you what your secret is and despite feeling half dead you start thinking 'Hey this is great! I'm losing weight!'. Then you find out that actually you aren't the luckiest girl in the world. You have a life threatening chronic illness and treating it involves endless mental arithmetic about carb to insulin ratios and adjusting for exertion and time of the month and most horrifically of all, that weight goes right back on. It's a strange feeling to know that people admired your body for eating itself."
Having to suddenly be meticulous about food in order to properly manage the condition can be a struggle for many. So it's not surprising that for some women, manipulating insulin to lose weight becomes an attractive prospect, despite the very deadly risks.
"In essence, the body cannabalises itself and that's where the weight loss comes from. While it might look like you're losing weight, you're actually losing tissue from all your major organs. Basically, there isn't a system in the body that diabetes doesn't affect. And you can end up very ill at a young age. And once that damage is done, it's too late," says Jacqueline.
Skipping insulin can negatively affect fertility, cause nerve damage, bone loss, as well as heart and kidney failure. And having dangerously high blood sugar can even trigger blindness. Diabetes in the main cause of blindness among people of working age in the UK and the highest rise is in type 1 diabetic women between the ages of 15 and 30.
As with many mental health disorders, diabulimia sufferers aren't ignorant to the health complications or dangers, but without the support to turn their behaviour around, recovery is extremely difficult. Jackie Fosbury, a psychotherapist specialising in diabetes, is well aware of the problem. She works in a specialist diabetes centre in Brighton and comes across many patients with diabulimia.
"People with diabulimia, like most people with eating disorders, are normally highly intelligent and know exactly what they're doing. I had a patient recently say to me "I'd rather be blind than fat". It's a very hard condition to treat," she says.
And the statistics we have on the condition are likely to be conservative estimates, suggesting the problem is far worse than we realise. A recent study in Australia said it was more like 85% of 15-18 year old women regularly omitting their insulin in order to lose weight. Research also suggests women with type 1 diabetes are three times more likely to develop an eating disorder than women who don't have diabetes
Jaqueline Allan says, "A diabetes specialist I know said that if you see someone who's a young female type 1 patient, you need to expect immediately that they're not taking their insulin properly because it's almost more common than not." She believes having more compassion for the young women diagnosed with type 1 diabetes could be a good start to tackling the problem.
"I've come across many people who were told as young children by nurses that they were obese. There's a lot of shame involved and finger-wagging. And unless you're dealing with type 1 diabetes yourself, you just don't get it. With all the will in the world, stuff still goes wrong all the time. It's an incredibly difficult illness to manage, particularly for a young women because your hormones fluctuate so much. If we took the shame out of diabetes management maybe we would chop a lot of this off at the source."
And because diabulimia isn't a recognised medical term, it means in most cases sufferers aren't getting the support they so desperately need.
"There isn't the right support because the right support doesn't exist. Often it's a case of wondering where the patient might fit. Is it an eating disorder or an issue with diabetes? And there are some GPs that believe it's a made-up internet term," points out Jacqueline.
"The nurses will say this patient is omitting insulin to keep their weight down but they don't say diabulimia. They don't like to say it because it's not formally recognised. And until it is we're a bit stuck to do anything about it," says Jackie Fosbury.
But, as Jacqueline and Jackie attest, even if these patients do get access to an eating disorder specialist, the treatment pathway for diabulimia would have to be completely different to one for more recognised eating disorders such as anorexia or bulimia. Factoring in insulin management complicates things and many wards just don't have the knowledge or experience to effectively manage a patient with diabulimia. There are currently only two units in the entire country who have a specific diabulimia programme.
Eight years ago, a close friend of Jacqueline's died from the condition, and she realised she had to try and raise some awareness of the devastating disease. She set up the charity Diabetics with Eating Disorders. The organisation's aim is to provide support, awareness, advocacy and action around diabulimia. Increasingly frustrated with the lack of support out there, Jacqueline has also gone back to university to study for a PhD in the subject.
A documentary called 'Diabulimia: The World's Most Dangerous Eating Disorder' is available on BBC iPlayer, which follows the lives of three young sufferers.