Hi: I am hoping that some of you “old timers” will be able to help me with writing a blog on “how did Type 1 diabetes ever become defined as a childhood disease?” The earliest descriptions of Type 1 diabetes, 1800+ years ago, were of adults. In all my historical documents and books, the first mention that I find of “juvenile diabetes” is in a 1958 book “How to Live with Diabetes,” but the authors (Henry Dolger MD and Bernard Seeman) mention that more adults than children are diagnosed with “juvenile diabetes.” Mary Tyler Moore was diagnosed with Type 1 diabetes in 1969, at age 33. TuDiabetes founder Manny Hernandez was diagnosed with Type 1 diabetes in his thirties, although he was initially misdiagnosed as having Type 2 diabetes. The Juvenile Diabetes Foundation (now JDRF) was founded in 1970 by parents of children with Type 1–this seems to me to be the origin of the “Type 1 diabetes is a childhood disease” myth. I would greatly appreciate the input of any “old timers” or people who are interested in diabetes history! Thanks in advance.
This is an interesting topic; thanks, @Melitta
These links may prove useful on your quest to understand how Type 1 became known as a childhood disease.
Edited to add the links!
That logic is clear enough, but then adults did/do continue to get it. So I’d still like to see a more granular etymology, particularly as to how it got locked in as the official diagnostic term. I was dx’d at age 28 in 1983, and my dr explained about the t1/t2 thing being proposed as a better terminology, de-linking it from age because people my age and older were also getting it, but it was not yet official. So my dx reads “Diabetes melitus (Juvenile type).”
Even today the diagnosing type 1 vs type 2 is vague. They can run multiple test and sometimes say you have type 1 or 2 but sometimes after test its still not clear.
Example being type 1’s that have no known antibodies.
I think part of the issue is adults being called type 2 because they didn’t have a good test to know they are just slow developing type 1’s.
This is a good question, @Melitta. I can’t shed any light on the actual reason for the misnomer, juvenile diabetes, but the explanation about the founding of the Juvenile Diabetes Foundation (the predecessor of the Juvenile Diabetes Research Foundation and today’s JDRF) by parents of child T1Ds makes sense to me.
I was diagnosed at the age of 30 and luckily received a correct diagnosis by my general practitioner. I think he was moving on an educated hunch and I’m happy I didn’t get shunted down the T2D path of exhausting a list of pill therapies, a risky path for a real T1D. To my knowledge, no antibody blood tests were ever performed. This was 1984, in fact, 35 years ago today.
But the earliest descriptions of Type 1 diabetes (Aretaeus of Cappadocia) were all of adults, and the 1958 book “How to Live with Diabetes” makes it clear that new-onset Type 1 diabetes was mostly seen in adults. So no, most new cases weren’t seen in children, but were seen in adults. That remains true today. I am just trying to understand where the myth that it is a childhood disease originated.
@DrBB and @Terry4, I have always thought that it was probably the Juvenile Diabetes Foundation (now JRDF) that promoted the myth that Type 1 is exclusively a childhood disease. JDRF was founded by (fierce!) parents with Type 1 children, and they wanted to distinguish Type 1 from the more common Type 2 (that sadly was and is stigmatized). But the ancient physicians knew it was a disease of adulthood, and Drs Allen, Banting, and Joslin (at the time of the discovery of insulin in 1921/1922) knew that both adults and children got the disease, and my 1958 book “How to Live with Diabetes” clearly says that Type 1 affects far more adults than children. But I am hoping that some “old timers” can shed some light on the origins of the myth. Your stories are useful, and you both certainly were fortunate to be correctly diagnosed!
What struck me about my experience is that it seems a useful inflection point. My GP knew “juvenile” was a misnomer, and explained it to me as such, yet still felt constrained to use that term when recording his diagnosis. So what exactly was the mechanism of that constraint? Was it just convention, or was there something more formal involved? Nowadays insurance companies exercise a huge influence over these things via ICD codes, so it’s all very locked down and official. Was there a similar registry of some kind enforcing conformity back then? If it was, for the sake of discussion, the Merck Manual, then a trip to a good university library and some help from a reference librarian might help pinpoint when it entered the medical lexicon. Might learn along the way what the institutional process was for make those decisions. Analogy would be the psychiatric DSM, where debates over things like “homosexuality” as illness have been exhaustively contested, changes made, and the whole history of that debate can be traced in the public record. I actually have a friend who’s a reference librarian, several decades in the Harvard library system (reckoned >= Library of Congress). Strikes me as a kind of fun research project, and that’s what these guys get paid the big bucks for. I’ll run it by her just for kicks.
The very first distinction between what we today call Type 1 and Type 2, was made by Himsworth in 1936. He called the types “insulin-sensitive” and “insulin-insensitive”. Reference: https://academic.oup.com/ije/article/42/6/1602/742589
“Juvenile diabetes” was the term through the 60’s and 70’s for sure. I remember when I turned 18 that the docs told me I no longer had juvenile diabetes but now had insulin-dependent diabetes. I think for a while “insulin-dependent” and “non-insulin-dependent” were in vogue, through the 70’s and 80’s.
Type 1 and Type 2 were not actual terms until defined in 1979 and were not in wide use until the 1990’s. https://www.ncbi.nlm.nih.gov/pubmed/510803
Would love to read it but I couldn’t find my way from the link to the actual article.
Here we go.
Diabetes 1979 Dec; 28(12): 1039-1057:
A classification of diabetes and other categories of glucose intolerance, based on contemporary knowledge of this heterogeneous syndrome, was developed by an international workgroup sponsored by the National Diabetes Data Group of the NIH. This classification, and revised criteria for the diagnosis of diabetes, were reviewed by the professional members of the American Diabetes Association, and similar versions were circulated by the British Diabetic Association, the Australian Diabetes Society, and the European Association for the Study of Diabetes. The ADA has endorsed the proposals of the international workgroup, and the Expert Committee on Diabetes of the World Health Organization has accepted its substantive recommendations.
The salient changes proposed in the classification are that 1. The insulin-dependent, ketosis-prone type of diabetes, which is associated with increased or decreased frequency of certain histocompatibility antigens (HLA) on chromosome 6 and with islet cell antibodies, be considered a distinct subclass of diabetes [insulin-dependent diabetes mellitus (IDDM)]. This type of diabetes has been inappropriately termed juvenile diabetes. Since it can occur at any age, it is recommended that diagnosis based on age of onset be eliminated.
Not an answer to the OP of course, but kind of a terminus ad quem anyway, and sketches out the process involved in displacing “juvenile” as the preferred term. Question is, did “juvenile” come into position as a diagnostic term via a similar formal process (possibly under influence of the JDRF?) or something more ad hoc. If the former, that would tell us a lot about the institutional enshrining of “juvenile” as diagnostic term, but that’s a big “if.” I almost want to ask, was it ever officially a diagnostic term, but it certainly was used that way in my case, despite the obvious inappropriateness. (As my dissertation advisor said at the time, “It must be even more annoying to get the ‘juvenile’ kind.”)
@DrBB, all good points, and great investigation. I never thought of “juvenile diabetes” as a diagnosis, but the problem occurred that if a person was not a child, then doctors often would then misdiagnose the person as having Type 2, since they weren’t a juvenile. You being a lucky exception.
This is true in my own family as recently as my fathers generation. They lived in an isolated area without access to Dr.s so when most of my fathers siblings died as infants and toddlers it was just chalked up to typical childhood illnesses. It was only after my diagnosis that their passing was even considered to be something that could have been treatable.
While I don’t really understand why insulin dependent diabetes came to be known as a strictly childhood illness I can see why it got so much attention. Most people with type 1 who were diagnosed as adults describe a slow degeneration whereas most children including myself went from being perfectly healthy active kids to nearly dead within a few days or weeks. Perhaps the distinction came to be made because the actual juvenile form was usually so much more life threatening right away. I think that the narrowing down of diabetes to “juvenile” and everything else was largely a result of organizations trying to make the public (and I would include Dr.s in that group) aware of the symptoms so that a very vulnerable portion of the population could get the treatment that they needed.
Very interesting everyone! And I still had a Chiropractic Doctor just a couple of years ago suggest I could be cured if I changed my diet and took certain herbs because I didn’t get it when I was young!
Not to detract from your point, but just to note there are plenty of exceptions to that “most.” My own case went from zero to acute/life-threatening over about 4-6 weeks. Kinda like the “juvenile” thing…
I was diagnosed at age 14 almost 40 years ago after extreme DKA (spent two weeks in the hospital recovering).
My docs at the time told me that if I had been just a year or two older, they would have had to diagnose me with Adult-Onset diabetes. Amazing but that’s what they said!
FWIW, Websters online dates the first known use of the term “juvenile diabetes” to 1951. Infuriatingly, they don’t give the actual citation. You can look at a whole slew of other terms that came into existence that year, though, if you want to waste some time. Grrrr.
I wouldn’t consider myself an “old timer”, but when I was diagnosed in 1991 at age 9, I remember all three terms being used. Some of the educational materials we got said “Type 1”, some said “juvenile diabetes”, and some said “insulin dependent diabetes mellitus”. My MedicAlert bracelet said the latter. Things didn’t seem to land clearly on “Type 1” until the late ‘90s.
That is terrible, @Tim12! I know a young woman whose Type 1 mother died when the young woman was 17. At 19, the young woman was diagnosed with diabetes, but misdiagnosed as having Type 2. She later was correctly diagnosed, but already had serious complications. Such nonsense!
I was diagnosed in 1970. At that time we were told juvenile diabetes and insulin dependent. 1970 was the year JDF was started so my parents went with the ADA because no one knew about JDF. My first ID bracelet said insulin dependent. When my parents talked to other about my diabetes, it was always stated as juvenile diabetes. When I went to summer camp, we all had juvenile diabetes. Really not sure how and why the terms we used were the ones. But I will say, outside of summer camp, I knew no one with diabetes. All the way through high school, I never meet another person with diabetes. It wasn’t until later when my grandmother was diagnosed with type 2 but I really do believe it was stated as adult onset. Keeping in line with my juvenile diabetes diagnosis. So sorry I have no true facts, just what we went through. And I will say, there was the shame/ blame back then. My parents never got the dumb lines like, did you feed her too much candy? Or when will she outgrow it? Or what did you do wrong? Exercise never came up so I was a skinny kid who did what all kids did back than, played outside all day long. It always drives me nuts how much shame and blame there is with this disease.
Whether it’s juvenile diabetes, adult onset diabetes, insulin dependent diabetes, insulin resistant, type 1 or type 2, we are all brothers and sisters fighting the fight together. So pick your name and go forth proudly!
I was diagnosed at the age of 10 in 1967, 3 years before the JDF/JDRF was founded (1970 according to your previous post). Type 2 was not a national epidemic back then, so there wasn’t a stigma. The facts were vastly different. Multiply that last sentence x 100. It was much harder to stay alive back then. Parents weren’t “fierce” about differentiating between types or worrying about non-existent social stigmas. They were “fiercely” trying to keep their kids alive or from going blind.