Diabetes Needs a New Name Change????……..Ummm…….More than That!!!!

T1 DiabeticLet me start off by saying this is NOT AN ARTICLE on what to do with the name of diabetes.  I was just looking at some of those posts and I happen to cut away and started reading an article about one of the rookies trying out for the Baltimore Ravens Football team who has T1 diabetes.

In the article the writer calls type 1 a rare disease.  It hit me as weird.  Rare?  I guess being involved in the diabetes world for as long, and as much, as we have been, I just never used the word ‘rare’ to describe what my kids have.

Quick answer:  How many people have T1 diabetes in the United States?  Do you know?  Me either so I started trying to find out.  And it is THIS point that leads to my headline.

Now there were a whole lot of people who had something to say about what the name of T1 diabetes should be, should not be, and/or what to do about it and that reading showed a fabulous passion on all sides of the fence.   Those who know me know that I love passion.  It stimulates discussion and education when directed correctly.  That fabulous line from Field of Dreams when James Earl Jones’ character says; “I wish I had your passion Ray, ………..misdirected though it may be………it is still a passion”, is one of my favorite lines.

And perhaps we should ‘tap into’ that passion to help fix a really big problem.

It seems to me that there are many things wrong with the perception, reporting, and simple facts about T1 Diabetes.  More than just the question; “Should one be called a person with diabetes or a diabetic?”  From my homework, the best ‘educated’ (notice the quotes) guess is that there are between 1-1.5 million people with diabetes, with some places saying 2 million.

The American Cancer Society states that around 232,340 women will be diagnosed with breast cancer in 2013.  Seriously 232,340 people and there are anywhere from 1-2 million people with T1 Diabetes?  Seems to me there is a SERIOUS reporting problem that one disease estimate could be that defined; and we do not even know how many people actually have T1….don’t you agree?

Thankfully the T1D Exchange is working real hard to capture numbers to share information but so far, only 26,000 are part of that registry.  “Only” is a relative term because THAT IN ITSELF was a monumental job to capture I’m sure.

Try to find an exact number; even to ALL of diabetes, seriously—look at those numbers; the American Diabetes Association states that 7.0 million people do not know they have it (which I imagine is T2); seems more people do not know they have it than we know more exactly how many have type 1…… I the only one who finds this a bit disconcerting? (AND TO BE VERY CLEAR: I am in NO WAY stating that the ADA or any other organization is at fault for the statistics they show on their website.  This is problem is so much more than stating facts as they are made known; this is a much bigger problem on collecting proper data for others to distribute.—-I just wanted to be clear about this point.)

If those who keep national statistics do not find it important enough to obtain more exactly those afflicted with T1 Diabetes; if reports do not know more exactly who has suffered and even died from T1 Diabetes; if T1 diabetes and complications statistics are kept so loosely that no matter how hard you ‘google’ or ‘yahoo search’ you cannot find answers: how can we blame media and others for ‘getting it so wrong’?

Let me ask another question:  In your heart do you think that there are more than 1-1.5 million people with T1 Diabetes in this country? 

I’m not sure either……..seems though someone should be more diligent in finding out…….yes?

I am a diabetes dad

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17 replies on “Diabetes Needs a New Name Change????……..Ummm…….More than That!!!!”

Interesting post. Tom. I agree – the tracking is a monumental job, and props to Helmsley and T1DExchange for what it’s doing. An interesting thing I found when asking the ADA about this a couple months ago for D-Alert Day is that this tracking problem is at the ground level… meaning, the doctors and HCPs who are filling out forms about diabetes history or diagnosis simply ask “diabetes.” They don’t specify. And so, it’s nearly impossible for even the ADA to break this down – which is why we always see that 26M-ish number attached to those with diabetes from them. Same with the JDRF – they get that info from their networks, and it’s similarly not complete. So, THAT seems to be a starting point – to get the medical profession to recognize the need to differentiate in these questions so we can help build better stats. Thanks for this post on such a touchy topic.

Thanks Mike—I am actually going to go back in and edit just to clarify that this is not an Organization tracking problem or fault…….just to be clear. Thanks for writing.

In response to just a couple of your Q. Should those w/T1 be called diabetics or a person with T1. DEFINITELY, a person with T1. I do not want my daughter ‘labeled.’ I cringe when someone calls our children and young people ‘diabetics’. Next point. This comment may not be politically correct, but why don’t the diabetes organizations CARE to get the #’s right? I have my opinion.

When I was at dLife—we did a piece on this done so very well by Jim Turner.
take a look. I agree with you but am surprised that in speaking to PWDs I find that some do not care one way or the other; and some care a lot.
Very interesting.
Even if they wanted to get the stats correct…..the correct stats arenot available to get. Why don’t they push for it—-I would agree that many have an opinion about that.
Thanks for writing.

Wondering where organizations such as the American Cancer Society (as you stated) get their data?

Again that discussion is one that is out there and EVERYone is entitiled to be heard. the points go deeper. It goes into the Docs offices, the emergency rooms, the hospitals, and whoever does the counting. It goes onto the ‘what’ is being counted, the ‘how’ it is being counted. and where T1–T2–and other diabetes fall on the list where the check is made.

As I stated, this is much bigger than we realize or make a fuss about.

Thanks for writing.

I think the major problem isn’t the name, it’s the ignorance of the general public and, sadly, even some doctors. It should NOT be that hard to get a clear number on any disease. But there are problems because sometimes it’s hard to know what form of diabetes someone has at the beginning. My husband presented with increase thirst, frequent urination, and weight loss, and a high 300s blood sugar at the age of 25. The general practitioner that evaluated him said, “I think he’s a T1, but blood work will need to confirm.” So he was put on pills until we went to an endo a week later. They ran bloodwork. He was antibody negative, had a normal c-peptide level, and so he became “Most likely a T1, but you want to hope you’re a T2.” Ten months later, we went in for a routine check-up (still on Metformin) and I received a rather panicked phone call from a very frightened nurse about how my husband’s c-peptide level was “Below detectable levels and I needed to get him on insulin NOW before he DIES!!!” It was ten months after diagnosis before we truly knew what he was. Our daughter was caught at 800, so she was a clear-cut insulin dependent case from day one. She is also antibody negative, as well as negative for all known types of MODY. Our oldest boy has been “diagnosed” for over 4 months and still not on insulin. Why? No one can answer that. And he’s not high enough to safely start insulin, so until then, we just have to deal with the random highs and weight loss until he’s in more danger. No joke. If endos can’t even tell what they’re dealing with, then how can they even begin to report it?

Again, this article is not about the name of diabetes at all, which I clearly stated. It is just that—-not knowing or ignorance as you called it.

I, personally, would have many many questions based on your story. I do hope you seek the proper medical teams to advise you on your next steps for your family members and good luck.

Thankfully, we have really great endos. Unfortunately, there are only so many tests available to run. Sometimes you just end up with more questions than answers. I always just tell people I have atypical T1s. It seems to be the easiest explanation. I save the details for that random ER doctor that I really want to puzzle the heck out of. LOL! 🙂 The question then, if we are truly searching for a total on T1 and T2 diabetics in America, is where do the “weird ones” count? Obviously, two of my three make virtually none of their own insulin and are on pumps. My other one is headed that way as well, his beta cells are just making an extremely valiant (and abnormally prolonged) last stand. Do we count those that are antibody negative in the T1 group? Do we count the MODY in that T1 total also? Technically, they have lower than normal c-peptide levels. I’ve seen reports by some doctors that estimate 10% or better of the T1 population actually have a form of MODY rather than true auto-immune diabetes. It would seem that diabetes is just WAY more complicated than our current divisions account for.

Another quandary is a discussion on CWD about what is the difference between the types. Where and what divides the two? It is very interesting to read opinions of people in the thick of type 1. Some of whom have good points but if no one has a set definition in the medical world has a published easily found then how can the count be accurate or defined. Maybe your expertise is needed there.

The CDC is a good source of information. Type 1 diabetes is rare when compared to Type 2. When looked at as a single disease state Type 1 accounts for only 5-10 % of those diagnosed with diabetes.

“…seems more people do not know they have it than we know more exactly how many have type 1…… I the only one who finds this a bit disconcerting?”

No, you aren’t the only one… Now, you are speaking my language. I have emailed/talked/annoyed people with this exact issue for years. How can we “not know”, “not care”, “ignore” the issue of how many children type 1 diabetes affects and how have the rates changed over the course of the last 25 years? There are no numbers reported for type 1 diabetes? Huh? How is that possible? And yet, we seem to be more concerned with the numbers of chicken pox cases across the country? Hmmmmmm? To not care, to not wonder, to not ask the serious questions… is to hide your head in the sand. The larger organizations supposedly looking out for our kids… seem not to be all that interested in numbers and rates of increase? It makes no sense to me. While you may not want to call out the large organizations, I will… ADA, JDRF, CWD, you have not done your job… You have not even attempted to look at numbers and/or trends! You ignore basic science (ie more environmental triggers – yes, vaccines too – trigger autoimmune diseases in children). Look at the numbers, look at the trends, do some research… It’s all there to see and yet these organizations will likely ignore the obvious and spout silly CDC talking points about how “No one knows what causes Type 1 Diabetes”…. It’s a huge mystery. Really? No mystery here.

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