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With diabetes, there’s a focus on numbers. With eating disorders, people need to learn to let go of the numbers.

Diabulimia is an eating disorder that affects mainly young people with Type 1 diabetes, who skip their insulin injections in order to lose weight. Diabulimia can be very dangerous, as high blood glucose levels can lead to short term complications such as diabetic ketoacidosis (DKA) and over the long term lead to kidney and nerve damage. People with diabulimia need appropriate and rapid access to psychological care and support to help them manage their condition effectively.

Diabulimia was a condition that Sara Pastor struggled with, having discovered that she could use her diabetes to control her weight if she stopped taking her insulin-  a discovery that soon led to frequent sugar binges and insulin deprivation.

A recent article, in which Pastor’s story is highlighted, suggests that studies report that people with Type 1 diabetes are twice as likely as people who aren’t living with diabetes to develop an eating disorder. Diabetes can lead to a host of medical complications and the development of eating disorders in individuals living with diabetes being seen developing complications at an earlier stage in life:

Over time, diabulimia can have potentially devastating medical consequences, says Shanti Serdy, an endocrinologist at the Joslin Diabetes Center in Boston. “Unfortunately I have seen patients develop complications that normally would happen much later, if at all, such as loss of vision and kidney failure,” she says.

The condition can also quickly turn fatal: One effect of insulin deprivation is that the body can no longer use glucose for energy, and so burns fat as an alternative source. This results in the buildup of a toxic substance called ketones, which can rapidly lead to severe dehydration, coma, and sometimes death.

Pastor’s problems reached their climax one day when her parents were trying to wake her fearing that had slipped into a coma. She was then able to get the help she needed to learn to look out for herself. Like many others, Pastor had been obsessed with food as a result of the constant attention it is given when individuals are first diagnosed.

Often, Type 1 diabetics’ risk of developing an eating disorder has to do with the messages they receive about their disease early in life, says Dawn Taylor, a psychologist at the Melrose Center. After a child is diagnosed, families typically change how they eat and establish new rules around food—an important part of managing the disease, but also often a tricky line to walk.“

A message gets into [the young diabetic’s] belief system that desserts are bad,” Taylor said, and “a lot of them say their doctors tell them they will gain weight on insulin, which they interpret as insulin equals fat.” This can lead to an all-or-nothing mentality—and then, when patients do allow themselves certain foods, they can feel out of control. That’s often when the deliberate insulin restriction begins, though many fail to recognize their behavior as a serious problem.

Diabulimia can be beaten with the appropriate support systems in place. Research has found that there is a 53 percent chance of recurrence within six years of remission but with ongoing support recurrence is far more unlikely. The full article, originally published in The Atlantic, can be found here.

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