(NEW YORK) — At age 14, Erin Williams was tired of medicine. Williams was diagnosed as a type 1 diabetic at age 11, and after three years of enduring a never-ending regimen of insulin shots and strict diet restrictions, she was frustrated.
Embarrassed by her disease, she kept it a secret from everyone but her closest family and friends. At birthday parties, she made up excuses about why she couldn’t have soda or cake. When a classmate saw her drinking juice boxes in the nurses office, she endured weeks of being called the “juice box thief” rather than just tell her classmates she had low blood sugar because of diabetes.
Eventually, Williams rebelled the only way she could, she decided not take her insulin. She just didn’t want to adhere to the strict diet and medical regimen even though it was vital to her health.
The next morning when Williams woke up, she felt fine. Emboldened by her experiment, she continued to restrict her insulin.
Without a regimented amount of insulin in her body to process glucose, Williams’ body started to burn through fat and muscle. She lost weight very quickly even as she ate all the same foods. Classmates started commenting on her weight loss and remarked that she looked great.
After living with type 1 diabetes for three years, Williams was exhibiting the first signs of a disorder often called diabulimia. The term refers to the dual diagnosis of type 1 diabetes and an eating disorder.
Many type 1 diabetics with eating disorders will not take their prescribed insulin so they can lose weight. Deprived of insulin, the body cannot break down sugars from food to use as energy. Instead, the body’s cells break down fat already stored and try to flush out the excess sugar through the urine.
While it leads to weight loss, it can also lead to nerve damage, damaged eyesight, kidney damage and osteoporosis, among a host of other ailments.
A study from 2007 that followed diabetics who restricted their insulin over 11 years found their mortality risk was three times higher than those who did not restrict their insulin.
While anorexia or bulimia are familiar terms, diabulimia is little known, even though it can affect a significant portion of the type 1 diabetic population. Studies and research into diabulimia are not comprehensive, but a 1994 study found that up to 30 percent of type 1 diabetic women will intentionally stop taking their insulin at some point in their lives to lose weight.
When Williams was diagnosed with type 1 diabetes at age 11, she became one of the approximately three million Americans to suffer from the autoimmune disorder in which the pancreas does not produce insulin. According to the Juvenile Diabetes Research Foundation, 30,000 Americans are diagnosed with the disease every year.
Her diagnosis also meant that her chances of developing an eating disorder more than doubled. A study from the University of Toronto found that adolescent girls with type 1 diabetes were 2.4 times more likely to suffer from an eating disorder than girls without diabetes.
Ann Goebel-Fabbri, a clinical psychologist and assistant professor in psychiatry at Harvard Medical School, has worked with many type 1 diabetic patients suffering from eating disorders at the Joslin Diabetes Center.
She said that there isn’t a clear reason why type 1 diabetics have an increased risk for having an eating disorder, but she suspects that part of the problem is the way diabetics have to focus on food intake, their carb level and calories.
“The treatment itself [means] paying close attention to food and time of eating,” said Goebel-Fabbri. “Oftentimes, that can mirror an eating disorder mindset.”
Copyright 2013 ABC News Radio
Virginia Anderson, Kaiser Health News
Ben Tinker, CNN
Laura Smith-Spark, CNN