Diabetes by any other name is?

Note: This is a longer version of something I posted at a diabetes forum.

Two mothers with young children who have Type 1 diabetes launched a petition to change the names “Type 1 diabetes” and “Type 2 diabetes” to names that reflect “the nature of onset for each form of Diabetes” in the hope that this will clarify the confusion that the public has between Type 1 Diabetes and Type 2 Diabetes. This confusion is usually seen as disadvantageous to Type 1 diabetics because they are lumped with Type 2 diabetics.

I’m a bit late here since the petition was started about a month ago, and there have been active discussions in the DOC. But this has been bugging me, and since I did not have this blog a month ago, I hope I’m forgiven for giving my 2 cents’ worth, belated as it may be. I do not wish to be controversial here, and I do not wish to alienate people with Type 1 diabetes, but I just want to make a practical suggestion to the search for new names (if that search is ever undertaken).

I will not go into the pros and cons of the change of name itself as presented by the petitioners (that will only lead me to a long discussion on whether anyone has 100% identified the causes of diabetes). I only want to say that if anyone wants to change the names to achieve the objectives stated by the two mothers in their petition, then please remove the word “diabetes” from the new names. If the medical-powers-that-be-who-give-diseases-their-names were to retain “diabetes” as the new names proposed by the petitioners suggest, then their efforts will be in vain. Let me give a simple illustration:

At a doctor’s clinic (after the name change):

Stranger (to a mom of a Type 1 diabetic):  Hi. How old is your boy?

Mom: He’s eight.

Stranger (who turns out to be very nosey): Why is your boy here?

Mom: He has diabetes.

Stranger (who obviously does not know any better): Oh, he just needs to diet and exercise. 

Mom: He doesn’t have that kind of diabetes. He has BCA.

Stranger (now scratching his head): What?

Mom: Autoimmune Beta Cell Apoptosis Diabetes.

Stranger (now vigorously scratching his head, with his brows raised, too): Come again?

Mom: “[BCA] is a chronic, autoimmune disease in which the body’s immune system destroys the insulin producing cells in the pancreas. [BCA] is never caused by diet or lifestyle, the onset is rapid and it cannot be prevented or cured” (adopted from the explanation for the petition). [She then continues to enlighten the stranger as to what BCA is and how different it is from Insulin Resistance Onset Diabetes or IRD, the new name of Type 2 Diabetes.]

Stranger (not sure what is going on in his mind at this point): Oh I see.

Now, if you replace BCA with “Type 1 Diabetes” or “T1D” then the conversation above is what is going on right now, starting with media. So, changing the names doesn’t really help in this sense.  But if one were to remove diabetes completely from references to Type 1 D or Type 2 D, then you won’t have the confusion.

If diabetes is kept as part of the name, then to stop the confusion, one ought to stop using the generic words “diabetes” and “diabetic” in introducing oneself; rather one can say “I have (or he has) BCA” for instance. There will be no (or at least reduced) judgment or prejudice, and people who do not know what it is will simply ask “What is BCA?” But if this were a solution, then we can actually live with the current names – all we need to do is stop saying “I’m (or he’s) diabetic,” but instead just say “I’m a T1D (or T2D)” or “I have Type 1 (or Type 2) diabetes.” This will signal to the listener that we are referring to a specific type of diabetes.

Of course whatever the name is, we still need to educate the public, especially the media, about the different kinds of diabetes (Type 1, Type 1.5, Type 2, MODY, LADA; and now people are talking about Type 3). The basic task remains.

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