Tuesday, April 23, 2013

A disease by any other name, still stinks.

"Diabetes."  I admit.  I'm not a fan of the name.  I'm even going to go ahead and say it is a stupid name.  It doesn't roll off the tongue, or sound serious at all.  Also, it has four syllables.  It's madness!

I'm pretty sure if Diabetes was in school, it would be teased about its name.  ALLTHETIME.

So if I had the opportunity to change the name of diabetes, would I?

If I could go back in time, yes, I would.  But my time machine is broke, so that isn't an option.

Right now, April 2013?  (With no time machine,) I really feel like that ship has sailed.

There is an online petition floating around the interwebz that has been causing all sorts of debate within the Diabetes Online Community.  Two mothers are trying to get enough signatures to change the name of Type 1 Diabetes.  I believe their intent is specifically driven to avoid confusion with Type 2 rather than my simple argument of "stupid sounding."  I get where they are coming from.  They are tired of convincing people they didn't wean their children off breast milk by using pixie sticks.  Honestly, I get it.


How do I feel about it now?

I'm glad you asked...

Type 1 Diabetes isn't confused with Type 2 Diabetes because people think it is the same thing.  They are confused because most of the free world doesn't even know that Type 1 exists.  People with Type 1 only make up about  5% of the entire diabetes population.   They are confused because the media lumps them all together and does not distinguish between the two. (Again, not because they think they are the same thing...but because they don't know about us.  At least that's my theory.  And in my opinion...my really good theory.)  Sounds simple enough...except it isn't.  To make matters worse, there is a medical community out there spouting misconceptions about both types.  There are doctors, and community leaders, and newspaper headlines screaming all the live long day that "DIABETES CAN BE REVERSED!  CURED!  JUST LOSE WEIGHT AND EAT LESS!"  Seriously.  They say it. 

Readers Digest had an entire issue with the headline flashing, "REVERSE DIABETES FOREVER!"  It was full of stories from doctors who testify if you lose weight, you'll lose diabetes.  If there are doctors saying it, and magazines saying it, and Dr. Oz saying it...and they lump it all together and say, "Diabetes this," and "Diabetes that," then what is the public to believe?

I know for a fact that you cannot cure diabetes.  Type 1 or Type 2.  Some people with Type 2 Diabetes can lose weight, change their diet and can go off medication.  But does that mean their diabetes is gone?  NO!!  It means diabetes is waiting.  Waiting for that weight to come back.  Waiting for its chance to spring back.  Sometimes it comes back, even if you've kept the weight off.  Many people can lose the weight but not get off their medications.  My father in law was overweight and had a horrendous diet.  He was diagnosed with Type 2.  Years later, he is now underweight, more active than he's ever been AND eats like a bird.  Still on meds.  His story is not unique.  He is part of a large population of skinny people who have Type 2 Diabetes.  There are a ton more factors that go into the risk factors for diabetes.  "I" know that.  And I'm just a stupid mom in a California suburb.  How come I get it and they don't?

There are no easy solutions.

But the media would have us believe otherwise.  And prominent medical professionals that don't know diabetes Type 1 or Type 2 are yakking their brains out about things they don't even know.  Most of these doctors aren't endocrinologists.  They don't work specifically with the Diabetes population.  They just figure fat people=Diabetes.

Am I angry that when people hear the word "diabetes" they think my boys got it because I threw sugar down their throats?  Yes.  Do I blame the people?  No.  They are just mirroring what they have been told by the media...and their doctors. 

By changing the name we are only clipping at the branches.  The weed's roots remain.  When is there going to be a summit to finally get down to the root of the problem?  Find out the different factors that contribute to both Type 1 and Type 2?  Let's summit this out people!  Is that too difficult? 

It may be.

Diabetes is a complicated disease.  It's stupid name doesn't communicate that well, but changing the name won't change the fact that people with Type 1 and Type 2 have a serious issues with insulin.  And because of that, we have a lot of things in common.  Complications from high blood sugars being on the top of the list.  But what if I told you that they are finding that there is an autoimmune factor to Type 2 as well?  New information is being siphoned through every day...but the word isn't getting out.  Scientists still do not know for sure what causes Type 1 or even exactly everything that contributes to Type 2.  They like to throw out a lot of blame, to the parents, to the environment, but really...any avenue they look down will give them reason to believe.  If I told you that going to school triggered Type 1, trust me, you could find a lot of data to concur.  A doctor at UCSF Stanford Medical Center told me that if they look anywhere for a link...they will find it.  It is a hopeless round.

If the scientific community is confused about Type 1 and Type 2, the greater worldwide public will be confused too.

And that isn't "the public's" fault.

How can it be?  These diseases are uber confusing.  But are we as a community helping the cause, or fracturing it instead?

As parents of Type 1 Children, we are so quick to tell people our kids are not Type 2, we end up throwing the Type 2 Community under the bus which only leads to facilitating the stereotype we are so adamant to debunk.

There just isn't an easy solution to all of this.  As long as know-it-all doctors, and full-of-them-self talk show hosts say diabetes exists ONLY because the nation is fat...answers will not come.  When will the scientific community stand up for us and say, "Wait a minute.  This is all more complicated then we think!" If they do, will the world will start listening?

But if we simply change the name...all the work we've put in is going to be gone. 

And who's to say that the new name won't be just as stupid.

My vote is, let's put our attention towards the media...and the medical community.  If kids are still dying from misdiagnosis from Type 1 Diabetes or "Juvenile" Diabetes ...a name that has been around forever...(and they are!) then how many more will die from a new named disease that nobody knows about?  To be honest...a few years ago I might have written up this same petition too.  I don't fault these mothers for doing it, I completely understand.  But if the name change did happen, I'm pretty sure it would go like this.  "My son has ........"  "What is .......?"  "Well it used to be called Type 1 Diabetes, or juvenile diabetes, but...." (One hour later.)  Maybe I'm just lazy.  Or maybe I'm a little bit angry that we are letting the world shame us out of this name.  We have nothing to be ashamed of.

Deep down though, I really think that education is the real issue.   Not the name.

Well...okay.  Kinda' the name.  But a disease by any other name is just as crappy. 

Pa-TATE-oh...Pa-TOT-oh.  Either way...it's still a potato. 


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