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……..am 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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