They are adults who come in droves to the diabetes online community; they write about how they are puzzled how they got Type 2 diabetes, when they are young and thin and athletic. Sometimes they are middle-aged and no longer at fighting weight. Sometimes they are older. They have been given Type 2 oral medications to control their blood sugar, but the oral meds are not working despite a very low carbohydrate diet and lots of exercise. They may mention that they have autoimmune diseases such as Hashimoto’s Disease (hypothyroidism) or celiac disease, and that autoimmune diseases run in their families, and that their grandmother/fill-in-the-blank had Type 1 diabetes. They may mention that they had gestational diabetes that had to be treated with insulin. Their health is deteriorating, but their doctors just insist that they are not correctly following the doctor’s prescribed program. Before there was a diabetes online community, I met these same people (people with diabetes or PWDs) at other diabetes-related events. Some of them already had serious complications. Who are these people and what is going on?
Who are these people? These people are misdiagnosed Type 1 diabetics. They have been misdiagnosed as having Type 2 diabetes, when in fact they typically have Type 1 autoimmune diabetes (sometimes called LADA (latent autoimmune diabetes in adults) or Type 1.5). But because they are adults, and because doctors have bought into the myth of Type 1 being a childhood disease, they have been given a Type 2 diagnosis strictly because of age not etiology. And it is not just people with slow-onset Type 1 diabetes who are misdiagnosed: even adults with rapid-onset Type 1 diabetes presenting in diabetic ketoacidosis (DKA) get misdiagnosed. Type 1 diabetes and Type 2 diabetes are completely different diseases, with different genetics, causes, treatments, and cures. The high blood sugars that result from trying and failing with pills for Type 2 diabetes, on a person who in fact has Type 1 diabetes, causes agony and suffering, not to mention hastening the complications of diabetes.
What is going on? Against all scientific evidence, many doctors insist on diagnosing an adult as having Type 2 diabetes when simple and relatively inexpensive testing (antibody testing (GADA, ICA, IA-2) at full price $471) could give a definitive diagnosis. We are not talking about one incompetent doctor, one bad seed, who is misdiagnosing PWDs, we are talking about many doctors throughout the world.
Why do doctors and the medical community cling to the myth of Type 1 diabetes being a childhood disease, despite all evidence to the contrary, and despite the fact that misdiagnosis results in horrific suffering and terrible outcomes for human beings who could thrive if given the correct treatment? What happened to the Hippocratic Oath (“First do no harm”)? This is a question for a psychologist to answer, since the doctors are acting in opposition to all scientific and medical evidence. However, we do know that scientific communities can be surprisingly resistant to new ideas or data that do not fit the accepted model, in this case the “juvenile diabetes” model. And here we are not talking about just a few people with adult-onset Type 1 diabetes, we are talking about two to three times the number of people with childhood-onset Type 1 diabetes.
Organizations such as the American Diabetes Association (ADA) remain part of the problem of the entrenchment of the myth that Type 1 diabetes is a childhood disease. In the United States, ADA is the "go to" place when people want information on diabetes, including the mainstream media. A prime example of the way that ADA does a terrible disservice to people with adult-onset Type 1 diabetes was the cover story of the September 2006 issue of ADA’s Diabetes Forecast. Grammy award winning guitarist Michael Ward was profiled, diagnosed as an adult with Type 2 diabetes. The article author and the Diabetes Forecast reviewers did not catch the fact that Michael Ward has Type 1 diabetes and was misdiagnosed and was receiving incorrect treatment (it was easy to catch based on things that Michael said in the interview). It took Diabetes Forecast readers, in letters to the editor, to point out the obvious. A person with Type 1 diabetes who worked for ADA for 12 years wrote to me, “Type I diabetes is the same in adults as it is in kids and, because it more commonly occurs in kids, used to be called "juvenile diabetes". In the scheme of things there are relatively few people with adult onset type 1 diabetes. The American Diabetes Association is a very reputable organization and only embraces information and treatments that have been proven by stellar research or have been scrutinized and agreed upon by panels of the country's top diabetes specialists (sometimes including international specialists).”
If the diabetes online community can figure out what is going on and can help get people correctly diagnosed and correctly treated with insulin therapy, why can’t the medical community? What is holding doctors back?
 Not all people with adult-onset Type 1 diabetes are young adults, Caucasian, thin, and athletic. Those are just the people that are easier to identify. Adult-onset Type 1 diabetes affects people of all ages, ethnicities, weights, and athletic abilities.
 Type 1 Diabetes in Adults: Principles and Practice (Informa Healthcare, 2008), page 27.