by Melitta Rorty
When most people think of diabetes, they think of diabetes associated with obesity (particularly abdominal obesity) and older age. When the mass media uses the term diabetes, it almost always is in reference to Type 2 diabetes, but never stated as such. Yet fully 20-25% of all cases of diabetes are Type 1 diabetes, formerly called juvenile diabetes, which is an autoimmune disease that can occur at any age, including in the elderly, and which requires exogenous insulin for survival.
The stereotypes, widely held both by the general public and medical doctors, are that Type 1 diabetes is strictly a childhood disease and Type 2 diabetes is a consequence of older age and obesity. A particular danger for those who acquire Type 1 diabetes as adults is that they will be misdiagnosed as having Type 2 diabetes, an altogether different disease with different genetics, causes, treatments, and potential cures. The consequences of misdiagnosis are extreme: rapid onset of diabetic complications and even death. Fully 10% of people diagnosed with Type 2 diabetes have the autoantibody markers for Type 1 autoimmune diabetes and have been misdiagnosed; that equates to millions of people in the United States alone who are misdiagnosed.
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I, myself, experienced the harsh reality of misdiagnosis. In 1995, at the age of 35, I was hospitalized in diabetic ketoacidosis (DKA), but because of my age, I was misdiagnosed as having Type 2 diabetes (by an endocrinologist who is a medical school professor), despite having zero risk factors for Type 2 diabetes. I was removed from life-saving intravenous (IV) insulin and released from the hospital, treated only with oral medications for Type 2 diabetes, a disease that I do not have. Thankfully, I remained misdiagnosed for only about a week, because in that time I read all the literature about diabetes that was provided to me at the hospital, and realized that the symptoms I had (extreme weight loss, diabetic ketoacidosis, blood glucose 7 times normal, massive ketones in urine) were that of Type 1 diabetes and not Type 2 diabetes. When I confronted the endocrinologist who (mis)diagnosed me, to his credit he admitted he had made a mistake and apologized. Then he changed my diagnosis to Type 1 diabetes and put me on exogenous insulin. Since that time, I have come to know hundreds of others who have been similarly misdiagnosed, and I have worked diligently to dispel the myth that Type 1 autoimmune diabetes is a childhood disease.
Sadly, not much has changed since 1995 and misdiagnosis is still extremely common today, in spite of widely available diagnostic tests that can assist with obtaining a correct diagnosis. As stated in a recent Wall Street Journal article on the problem of misdiagnosis,
"Most of my [adult Type 1 patients] have been misdiagnosed as having Type 2," says Robin Goland, co-director of the Naomi Berrie Diabetes Center at Columbia University Medical Center in New York. "Once the right diagnosis is made the patient feels much, much better, but they are distrustful of doctors and who could blame them?"In the United States, a medical doctor faces no repercussions if he/she misdiagnosis a person as having Type 2 diabetes when in reality the person has adult-onset Type 1 diabetes. The governing bodies (the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus; the American Association of Clinical Endocrinologists) describe the different diseases that fall under the umbrella term “diabetes,” but they do not identify any protocols for differentiating amongst the different diseases. So there is no requirement to diagnose, classify, and appropriately treat the different diseases that fall under the term “diabetes.” If there were a standard or guideline, doctors would be held accountable to the minimum standard of care: anything less would be malpractice. From my perspective, the lack of guidelines appears to be about limiting medical liability, not about enhancing patient care and saving lives.
If you or someone you care about has been diagnosed with diabetes and for any reason you suspect it may not be Type 2 diabetes, request that your doctor run autoantibody tests and the c-peptide test. Dr. Lou Philipson, Director of the Kovler Diabetes Center (University of Chicago) says:
“What I teach is that it is always important to ask oneself why a given patient has diabetes and what kind they have [Type 1, Type 2, or another form of diabetes]. Do not assume. If you have doubts, get another opinion, or get a referral to a see a specialist. Persistence can be life-saving.”How does all this relate to yoga and healthy aging? I started practicing yoga six months before my first symptoms of diabetes. When I was newly diagnosed, I was in extreme despair—I thought my life was ruined. But yoga saved my life then by allowing me some space and freedom from constant thoughts about my disease. And yoga continues to save my life today by helping me stay calm and focused despite the daily grind of self-care that those of us with Type 1 diabetes must do. I recommend yoga to anyone who has to live with the stress of chronic illness.