The Problem

It is time that the full scope of Type 1 diabetes is acknowledged, which includes millions of adults who are too frequently misdiagnosed as having Type 2 diabetes, an altogether different disease.

Monday, January 21, 2019

Historical References to Adult-Onset Type 1 Diabetes: How did Type 1 diabetes ever become defined as a childhood disease?

Close to 2,000 years ago, Type 1 diabetes was first described in detail by Aretaeus of Cappadocia, and Aretaeus only referred to adults acquiring the disease.  In the American Diabetes Association’s The Type 1 Diabetes Self-Care Manual (Jamie Wood, MD, and Anne Peters, MD, 2018), the authors open by stating, “Type 1 diabetes has unique features and contrary to popular belief, is not a disease only of children; it occurs at any age and in people of every race, shape, and size.”  Why then in modern times does the myth persist that Type 1 diabetes is a childhood disease, when for over 1,800 years it was documented as a disease that affected both adults and children, but primarily adults?  The consequence of the medical community believing in the myth that Type 1 diabetes is a childhood disease is that many if not most people who acquire Type 1 diabetes as adults are misdiagnosed as having Type 2 diabetes, an altogether different disease.  In fact, numerous studies, with the first study published in The Lancet in 1977, based on autoantibody testing, about 10% of people diagnosed with “Type 2” diabetes are autoantibody positive, have been misdiagnosed, and in fact have Type 1 diabetes.  That 10% represents the largest group of Type 1 autoimmune diabetes. Michael J. Haller MD, in Type 1 Diabetes Sourcebook (ADA/JDRF, 2013), says “Importantly, adults with [slowly progressive Type 1 diabetes] may represent an additional 10% of those adults incorrectly diagnosed with Type 2 diabetes."

Let’s follow the trail of history:

  • The first known mention of (possible) diabetes symptoms was about 1552 B.C., when Hesy-Ra, an Egyptian physician writing in what is called the Ebers Papyrus, offered remedies for “correcting urine that is in excess.”   However, it is uncertain whether what is being described is an excessive volume of urine (polyuria) or excessively frequent urination symptomatic of an infection.  Also around this time, ancient healers noted that ants seemed to be attracted to the urine of people who had this disease.
  • In about 100 C.E., Aretaeus of Cappadocia provided the first detailed description of diabetes.  Aretaeus of Cappadocia clearly described what is now called Type 1 diabetes (polyuria, polydipsia, rapid weight loss and swift death), and his descriptions were of adults.  In Principles of Diabetes Mellitus, 2nd Edition (Leonid Poretsky, MD, Editor), the authors in Chapter 1 write:  “A medical condition producing excessive thirst, continuous urination, and severe weight loss has interested medical authors for over three millennia.  Unfortunately, until the early part of the twentieth century the prognosis for a patient with this condition was no better than it was over 3000 years ago.  Since the ancient physicians described almost exclusively cases of what is today known as Type 1 diabetes mellitus [emphasis mine], the outcome was invariably fatal.”
  • Thomas Willis, in 1674, describes diabetes as “the pissing evil.”
  • In an 1877 book, Diabetes Mellitus:  Its History, Chemistry, Anatomy, Pathology, Physiology, and Treatment, the author describes the first stage of diabetes (and clearly describing Type 1 diabetes) as being of a shorter duration in youth than in adults.
  • Dr. Frederick Allen of the Rockefeller Institute in New York publishes his Total Dietary Regulations in the Treatment of Diabetes (1919) that introduces a therapy of strict dieting – dubbed the ‘starvation treatment’ –- as a way to manage diabetes.  Dr. Allen described both adults and children as having what is now known as Type 1 diabetes.  His “Case #1” was a 28-year-old woman with Type 1 diabetes.
  • Insulin was discovered in 1921/1922, with the first human injected being a 14-year-old boy, Leonard Thompson, on January 11, 1922.  Frederick Banting’s medical school classmate, Toronto physician Joe Gilchrist who had been diagnosed with diabetes several years prior, was the first human that Dr. Banting injected with insulin, in May 1922, and Dr. Gilchrist was the “guinea pig” for experimentation on dosing and purification.  Insulin was first given to both children and adults who were dying of the disease, but the children received the most publicity.
  • Elliott Joslin gave his first patient insulin in August 1922.  Elizabeth Mudge became diabetic in July of 1917, at the age of 37.  She restricted her diet, omitting sugar and starches, and was able to remain alive (barely) until Dr. Joslin started her on insulin after its discovery.  At the time of her first insulin injection, Elizabeth Mudge weighed 71 pounds and ate 900 calories per day (from Bittersweet).
  • Dr. Harold Himsworth performed a study, published in The Lancet on January 18, 1936, that demonstrated how to differentiate between two types of diabetes—insulin sensitive and insulin insensitive.
  • A 1958 book by one of the preeminent diabetes physicians of his day, How to Live with Diabetes, used the term “juvenile diabetes,” but stated emphatically that the disease was not confined to juveniles.  Also at the time, the authors said that about 30% of all cases of diabetes were of the insulin-deficient type.  The authors state that insulin-deficient diabetes [T1D] is about three times more common in adults than in children.  The authors noted the slower onset of insulin-deficient diabetes in adults, saying that only a small percentage of adults had the rapid-onset that is common in children.  The authors also noted that, “women may first become aware of diabetes during a pregnancy or after a stillbirth.”
  • In 1969, after suffering a miscarriage, Mary Tyler Moore was diagnosed with Type 1 diabetes at the age of 33.
  • In 1970, TV producer Lee Ducat founded the Juvenile Diabetes Foundation, now called JDRF, after Lee’s son developed Type 1 diabetes.  Lee was frustrated with what she saw as the limited aims of the doctor-dominated American Diabetes Association, and she decided to raise money for a cure for Type 1 diabetes.  The Juvenile Diabetes Foundation put a huge emphasis on children acquiring Type 1 diabetes, probably both because children garner much more sympathy and thus more funding, but also to differentiate Type 1 diabetes from the more common Type 2 diabetes, which many saw as a disease of older fat people that had much stigma associated with the disease [note that Type 2 diabetes is a complex disease and such generalizations are harmful]. [Note that today, JDRF is a tremendous advocate for people with adult-onset Type 1, and JDRF's funding of cure research and of technological progress, etc., is absolutely groundbreaking and game-changing.]
  • In 1974, Type 1 diabetes was determined to be an autoimmune disease, as documented with the publication of two articles.
  • In 1977, researchers published an article in The Lancet stating that 10% of people diagnosed with “Type 2” diabetes were autoantibody positive, and in fact had Type 1 autoimmune diabetes.  In the Lancet study, 11% of study subjects were autoantibody positive.  One conclusion of the study, “We believe that ICAb-positive diabetes controlled by oral hypoglycemic agents [O.H.A., medications for Type 2 diabetes] is an earlier stage in the same disease process (type 1 diabetes) that culminates in insulin-dependency.”
  • In 1985, in The Lancet, the authors stated that “Development of IDDM (then the name for Type 1 diabetes) is by no means rare in older patients.  In many older patients the progression to insulin dependence is gradual, the diagnosis can be made in a pre-ketosis-prone stage by clinical acumen, supported by observations of low insulin or c-peptide response during a glucose tolerance test or positive islet cell antibodies.”  They also described, evidently for the first time, Type 1.5 diabetes (“When diabetes is again reclassified, we may find them [diabetic patients who are ketosis-resistant but have an inadequate insulin reserve for normal health] accommodated in a new category of Type 1-1/2 diabetes—a condition in which insulin sustains not life itself but the quality of life.”
  • The term “LADA” (latent autoimmune diabetes in adults) was coined by Tuomi et al in a February 1993 article in Diabetes.  In that article, the authors state, “It further confirms that patients with LADA represent a discrete subgroup of IDDM [Type 1 diabetes] with a pathogenesis similar to that of IDDM.”  Tuomi et al defined LADA as being (1) diagnosed at age 35 or older, (2) GAD autoantibody positive, and (3) non-ketotic and non-insulin-dependent for 6 months or more.  The authors also state that people with LADA “have low body weight.”  Those that first defined LADA made no mention of relationship to obesity or insulin resistance, indeed, quite the opposite.
The first mention I found of “juvenile diabetes” was in the 1958 book How to Live with Diabetes, which said that Type 1 diabetes was three times more common in adults and children.  The 1970 advent of the Juvenile Diabetes Foundation seems to be the “change in tide” for claiming that Type 1 diabetes was a childhood disease.  Again, for 1900+ years, Type 1 diabetes was viewed as a disease that affected both adults and children, not by any means a childhood disease.


Diabetes:  A Medical Odyssey.  USV Pharmaceutical Corp.  1971.

Tattersall, Robert.  2009.  Diabetes:  The Biography.

Bliss, Michael.  2007.  The Discover of Insulin.

Reudtner, Chris.  2003.  Bittersweet:  Diabetes, Insulin, and the Transformation of Illness.

Dolger, H., and B. Seeman, 1958.  How To Live With Diabetes.  W.W. Norton and Company, New York.

Irvine WJ, McCallum CJ, Gray RS, Duncan LJP (1977) Clinical and pathogenic significance of pancreatic islet cell antibodies in diabetics treated with oral hypoglycaemic agents. Lancet 1: 1025–1027.

Antibodies to Glutamic Acid Decarboxylase Reveal Latent Autoimmune Mellitus in Adults With a Non-Insulin-Dependent Onset of Disease, Tuomi et al, Diabetes February 1993.

The Lancet, October 12, 1985.  “Insulin-Dependent?”


  1. Melitta, I always enjoy your articles. The references you listed are great!
    I cannot add anything based on my own childhood in the 1940's, and beyond. There were no T1 and T2 designations until 1959, and I was diagnosed in 1945. I did not know another T1D until I started joining online support groups in 2006. Can you believe that? My research and diabetes education began then, online.

    Have you read about the doctor in France who locked uncooperative patients in a room and fed them what he wanted them to eat? I don't remember the year involved. Then there is the starvation diet, I'm sure you have heard of that.

    A few years ago I read an article in which a retired teacher from a medical school/college said that the students there learned very little about diabetes. It is no wonder that so many PWD's are misdiagnosed with something other than diabetes. In 1945 there were three doctors who examined me when I was 5 years old. None of them recognized my symptoms. A fourth doctor had my BS tested, and made the diagnosis. If my parents had not taken me to a fourth doctor, I would not have lived much longer.
    So many doctors diagnose according to weight and/or age, and they do not have the autoimmune and c-peptide tests performed. I had both of those tests performed in the early part of this century. I was curious, and my endo was very cooperative. Of course, I am autoimmune, and my c-peptide was less than 0.01.
    I realize I am not helping with your primary objective. I do not know why T1D is primarily called a child's disease. Maybe it is partially due to the lack of education offered to medical students.

    I am anxious to read your article/blog when it is published.

  2. Thanks, Richard! I always appreciate your perspective.

  3. Your work has helped so many thank you 💙

  4. I was asked at Marshall's today if I wanted to donate to Childhood Diabetes. I never miss a chance to gently educate on this myth. I replied we do not call it that anymore; it is now called Type 1 and I became Type 1 at age 51. She seemed a bit confused. Thinking about it later I feel conflicted because many still do not know the terms T1 and T2, even though the have been around for decades. So what is the best way to solicit funding in just a few seconds from people who have no clue? The real problem is that the Medical Community has no clue about late onset. If they at least understood we would not have so many misdiagnosed. My big question is why did the terms childhood and adult become official Dx terms when the evidence did not support that?

  5. For those of you who are familiar with TCOYD and know of Dr Steve Edelman (Endo with T1D) TCOYD was founded by Dr E because he quickly saw in Med School that instructors didn't have a clue and were resistant to un-learning some of the myths. He tried setting up an organization that taught physicians and got nowhere. SO he took the sow to patients.