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Diabulimia - the world's most dangerous eating disorder

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  • Diabulimia is when people with type-1 diabetes (T1DM) ration their insulin to lose weight
  • People with T1DM who reduce their insulin lose weight but increase their likelihood of serious complications and death
  • Diabulimia is neither an official medical nor psychiatric disease state but its prevalence is relatively high and increasing
  • Diabulimia is challenging to diagnose partly because it is a portmanteau of 2 separate conditions and people with the condition often keep the bulimic aspect secret
  • Recently research into the condition and a clinic dedicated to diabetes and eating disorders have been launched in London
  • These initiatives are expected to increase our understanding of diabulimia, improve screening and treatment options and provide integrated medical and psychiatric support for people with the condition

Diabulimia - the world's most dangerous eating disorder

In January 2019 the UK’s National Institute for Health Research (NIHR) awarded clinician scientist Marietta Stadler, from King's College Hospital, London, £1.2m to fund research into diabulimia, an eating disorder in which people living with T1DM deliberately and regularly restrict their prescribed insulin dosage for the purpose of weight loss.

Diabulimia is a media-coined term and only recently has it been considered as a separate disease state although it is still not formally recognised as such. We start this Commentary by briefly describing some aspects of the history of the condition.
  • On 27th September 2011 Sian, the 24-year-old daughter of UK parliamentarian George Howarth, died from complications related to T1DM. As a teenager Sian had not kept up with her medication, she had missed appointments with doctors and dieticians, and was suffering from depression as a result of the condition. Sian had also developed neuropathy, which is damage to the nerves caused by T1DM. Since his daughter’s death Howarth has campaigned to raise awareness of diabulimia.
  • In 2012 Maryjeanne Hunt published a book entitled Eating to Lose: Healing from a Life of Diabulimia, in which she describes her struggle with the condition.
  • On 13th February 2013 the UK’s South London and Maudsley NHS Trust (SLaM) published an   article entitled, The Growing Problem of Diabulimia. According to Janet Treasure, Professor of Psychiatry and Director of Eating Disorder Services at SLaM, “it is estimated that 40% of T1DM females aged between 15-30 regularly omit insulin for weight control”.
  • In the July 2014 edition of Clinical Nursing Studies, a review paper concluded that diabulimia, “is not often recognized by primary healthcare providers or members of the individual’s family. If diabulimia is detected early, interventions can be implemented to minimize the risk of early morbidity and mortality”.
  • In January 2017 the UK's first diabetes and eating disorder out-patient service began working with young women living with diabulimia. Until then people in the UK with diabetes and eating disorders have been able to seek help for one or the other of the conditions, but never together. At the time of the clinic’s launch, Jonathan Valabhji, NHS England’s national clinical director for diabetes and obesity, said: “As a diabetes clinician I’ve seen first-hand the devastating impact that this condition can have on people and their families, and so these services are an important step forward in the recognition of diabulimia”.
  • In early 2017 the UK’s National Institute of Health and Care Excellence (NICE) upgraded its guidelines and quality standards for T1DM to feature psychological support related to the increased prevalence of eating disorders and the potential for insulin omission in people with T1DM.
  • On 4 August 2017, 27-year-old teacher Megan Davison, who had diabulimia, committed suicide. "In the absence of the help she needed, she couldn't see any way of carrying on," said her mother.
  • In September 2017, BBC Three aired a documentary entitled Diabulimia: The World's Most Dangerous Eating Disorder.
  • On 2nd November 2017, the Scottish Parliament debated a motion on raising public awareness of diabulimia.
 
Diabulimia 
 
Diabulimia merges the words ‘diabetes’ and ‘bulimia’. Diabetes is a disease in which your body’s ability to produce or respond to the hormone insulin is impaired, resulting in abnormal metabolism of carbohydrates and elevated levels of glucose in your blood. Bulimia is an eating disorder where you binge on food and then purge it by vomiting, laxatives, diuretics, exercise or other purging behaviours to prevent weight gain. Diabulimia is a term coined by the media and used by the general public. Although not well-known, diabulimia is a dangerous eating disorder among people with T1DM and describes the deliberate and regular administration of insufficient insulin to maintain glycaemic control for the purpose of causing weight loss by ‘purging’ calories via excess glucose in the urine. While not formally recognised either as a medical term or as a mental health condition in its own right, the Diagnostic Statistical Manual of Mental Disorders, (DSM-5),   considers that insulin omission in order to lose weight is a clinical feature of anorexia nervosa and bulimia. Diabulimia has also been recognised in the 2017 UK’s National Institute of Health and Care Excellence (NICE) guidance for eating disorders.
  
Insulin restriction and T1DM

To understand why insulin reduction causes weight loss, it helps to understand T1DM, which is a heterogeneous chronic lifetime disorder for which there is no known cure. T1DM is characterized by the destruction of pancreatic beta cells, culminating in absolute insulin deficiency and accounts for between five and 10% of the total cases of diabetes worldwide. In 2014 there were an estimated 422m people diagnosed with diabetes worldwide. The global prevalence of diabetes among adults over 18 has risen from 4.7% in 1980 to 8.5% in 2014.
Typically, T1DM has an early onset, but can occur at any age. It requires regular daily attention, which for children or adolescents can be daunting. The nutritional anomalies associated with the condition have important consequences (see below) and can be a physical and emotional struggle. To be diagnosed with T1DM represents a hard experience that requires subsequent psychological adaptation. Unfortunately, this often does not occur and can be followed by frustration and the non-acceptance of the disease.

T1DM occurs when your immune system attacks cells in your pancreas that make insulin and renders the pancreas unable to produce the hormone, which is needed to allow glucose (a sugar that circulates in your blood) to enter your cells to produce energy. When you consume food, your body converts it into glucose, which enters your bloodstream. Insulin helps to turn glucose into energy. Without a properly functioning insulin system, your body cannot break down glucose so it stays in your bloodstream and can be dangerous.

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If you are a person living with T1DM you must regularly check your blood glucose levels. Based on these levels and what you plan to eat, you must give yourself insulin. If you either fail to do so, or under-dose, your body cannot absorb glucose and it accumulates in your blood, a condition known as ‘hyperglycaemia’, in which case, your body attempts to compensate for the excess glucose, goes into starvation mode and starts to break down muscle and fat, releasing acids called ketones. The ketones build up, leading to diabetic ketoacidosis (DKA), which can be fatal.
 
Epidemiology

Data from large global epidemiological studies of T1DM reported in a paper published in the February 2014 edition of Diabetes Research and Clinical Practice, suggest that there are 0.5m children aged
It is estimated that as many as 11% of adolescent women with T1DM meet the criteria for a full-syndrome eating disorder. This is significant when compared to the incidence of eating disorders among women in general. It is estimated that between 0.5% and 3.7% of women suffer from anorexia nervosa, and an estimated 1.1% to 4.2% of women have bulimia in their lifetime. A paper in the June 2000 edition of the British Medical Journal, suggests that adolescent females with T1DM are 2.4 times more likely to develop eating disorders than peers of the same age without diabetes, and 1.9 times more likely to display symptoms of an eating disorder that does not meet the full diagnostic criteria. Other studies show that about 35% of females with T1DM have diabulimia.
 
Signs and symptoms

Diabulimia is challenging to diagnose and many primary care doctors and endocrinologists who treat people with T1DM may not recognize diabulimia among their patient population. This is partly because diabulimia is not an officially recognised disease state, partly because eating disorders and diabetes tend to be treated separately by different specialists, and partly because people with diabulimia may be ashamed and reluctant to seek help.

The most obvious sign of diabulimia is weight loss. Another common sign is poor blood-glucose control, as measured by elevated A1c levels, particularly if the person has a prior history of good control. Health professionals may wish to attune themselves to the classic signs of diabetes and the common symptoms of eating disorders. The former includes excessive urination, extreme thirst, constant hunger and fatigue. The latter includes dietary restrictions and heightened concerns about weight and body image.
 
Manipulating insulin to control weight
 
At the time of diagnosis with T1DM people have often lost a significant amount of weight. Regular doses of insulin are essential for controlling blood sugar levels and successfully managing the condition. However, a common side effect of such treatment is weight gain, and this can lead to a vicious circle. Insulin therapy can lead to weight gain; increasing weight may require increasing dosages of insulin to control blood glucose, which can lead to increased hunger and dietary intake, which can increase weight and enhanced concerns about body image.

Deliberately not taking or misusing insulin to cause weight loss is a purging behaviour that is uniquely available to individuals with T1DM. Weight loss can be achieved by decreasing the prescribed dose of insulin, omitting insulin entirely, delaying the appropriate dose, or manipulating the insulin itself to render it inactive. But when you have T1DM, you need insulin to live. Without it, you may lose weight, but more significantly you can lose your sight, harm your kidneys, damage the nerves in your feet and threaten your life.
 
Diets, social media and the thin ideal
 
The management of T1DM is further complicated because it also entails the careful selection of food, eating precise portions and the constant monitoring of carbohydrates. Because of the early onset of T1DM and the ubiquitous use of social media among children and adolescents, which often propagate the “thin ideal”; it seems reasonable to suggest that children and adolescents with T1DM are inherently more prone to issues revolving around food. Thus, in addition to manipulating insulin many people with T1DM commonly restrict their food intake, engage in bingeing and purging, misuse laxatives and adhere to overly strict exercise regimens to overcome body dissatisfaction.   
 
In the US the cost of insulin results in rationing dosages
 
It seems worth mentioning that a significant proportion of people with T1DM in the US appear to be forced into a similar state of diabulimia because of the high cost of insulin, lack of medical insurance cover (about 10% of the US population [33m] do not have healthcare insurance), and relatively high levels of co-payments for medical insurance. These aspects of the American healthcare ecosystem tend to drive a percentage of people with T1DM to reduce or ration their prescribed dosage of insulin, and their disease state then assumes similar manifestations to diabulimia.

According to research findings published in the June 2018 edition of Diabetes Care, about 27% of the 1.25m people in the US with T1DM say that affording insulin has impacted their daily life. For people with T1DM, “access to insulin is literally a matter of life and death. The average list price of insulin has skyrocketed in recent years, nearly tripling between 2002 and 2013 . . . . [and]  . . . individuals with diabetes are often forced to choose between purchasing their medications or paying for other necessities, exposing them to serious short- and long-term health consequences,” say the authors.

According to T1International, a charity which advocates affordable and accessible diabetes care, "People (in the US) spend most of their life in fear of losing their insurance, of running out of insulin and the cost going up, or of having to stay in terrible jobs or relationships to ensure they keep their health insurance coverage. . . . In the  worst case, folks are rationing insulin which has led to many reported deaths and excruciating complications."
 
Research aimed at improve treatment
 
Given the extent of diabulimia and the significant medical risks associated with the condition, more clinical and technological research aimed to improve its treatment is critical to the future health of this at-risk population. Stadler’s research referred in the opening paragraph of this Commentary is significant. Interestingly, the National Institute for Health Research only supports projects which potentially have a, "clear benefit to patients and the public". Stadler’s research is expected to take five years, aims to provide a better understanding of diabulimia and devise a 12-module treatment plan for people with the condition.
 
Clinic for people with diabulimia
 
People with diabulimia could only seek professional help for their eating disorder and T1DM separately, but never together: that was until January 2017 when an out-patients’ clinic opened in London specifically for people with T1DM and eating disorders. The clinic is led by Khalida Ismail, Professor of Psychiatry and Medicine at King's College, London and the lead psychiatrist for diabetes at King's Health Partners, London, which is comprised of King's College London, Guy's and St Thomas' NHS Foundation Trust, King's College Hospital NHS Foundation Trust and South London and Maudsley NHS Foundation Trust. Ismail wants to unite psychiatrists and diabetes experts. "They never meet patients together and it's an inefficient use of current resources . . . . we'd actually be saving money by joining up services," she says.
 
Takeaways
 
Diabulimia represents one of the most complex patient problems to be treated both medically and psychologically. Standard treatments for eating disorders are not usually appropriate for cases of diabulimia. Treatment for eating disorders tend to involve removing the focus on food, which is contrary to best practice for the management of T1DM. It is important for clinicians and researchers to better understand risk factors, screening tools and treatment options for diabulimia. Also, there needs to be better access to diabetes specialist psychological services that can provide the integrated support that people with diabulimia need. The London clinic for diabetes and  eating disorders and Stadler’s research are a good start.
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