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. 


  1. I signed the petition and shared in on FB, not because I believe it will change the name of type 1 diabetes or type 2, but maybe by sharing it somebody in my FB feed will read the "share" and think twice about diabetes. Maybe they won't throw the words "diabetic" around so carefree without knowing if the person they're talking about has type 1, type 2, oral meds, insulin dependent, had a pancreatomy...etc. And to me it does matter. To me I just want others to think more about their assumptions. As much as I want to educate the masses, sometimes these petitions (that others put their heart into) will make a difference. Maybe not THE difference, but I can only hope they'll help. Hopers gotta hope, right ?! I have trouble supporting JDRF and other large diabetes organizations because my husband has been hanging his hat (and dollars) on hope that it would make a difference for over 20 yrs...now we choose to diversify our hope and hand it out in high fives to people who think outside of the box for how to make a difference, even if all it does is get others to pause for one moment and think.

  2. I just want you to know Sarah, I totally respect your choice. We all need to look at it and follow our hearts, which is as it should be!

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  4. Haha!You just summed up my #1 problems with people viewing our Type One Trio. I have even family members telling me that we can control our Type One Diabetes with diet and exercise. One point, Type Ones are INSULIN dependent ... my pancreas is dead. As for Type 2s... its not the case- theirs is just overworked.

    Thanks for the post! :)

    Type One Trio

  5. Thank you so much for writing this post. I feel like this is something I could have sat down and written myself. We haven't had very many stupid comments about my daughter's T1 or my T2, but I know a lot of people do, and I just hate that. I would absolutely love to know why my daughter's immune system went haywire, and why my pancreas cannot produce enough insulin to meet my body's needs, but the fact of the matter is we don't know. Until we do, lots of ideas will float around in the media, and most of them will eventually be proven wrong. I have learned a lot more about my daughter's T1 from having T2 myself and have learned so much about my T2 because I manage my daughter's T1. We need to learn from and support each other and not worry about what our diseases are called. Any way you cut it, it's still diabetes - and they all stink!

  6. A rose by any other name would still smell as sweet. And diabetes by any other name would still be the same disease. Education is key, but no matter the name, you can't reason with crazy and you can't cure stupid. I agree that education and research is more important than the semantics of a name, because no matter what, it will still get associated back to T1 and juvenile diabetes and (one hour later) the same incorrect assumptions and misinformation will arise, then the education portion will have to begin again. Time is precious- save a step. :)

  7. I haven't signed the petition either for this (and other) reasons. The new names are just going to get substituted in for the old names. People are still going to have the same issues. Plus, I'm not even sure the new names would even be adopted by anyone. Considering how hard it is to get the media to tag on the "type 2" pre-fix, you really think they're like to spend time on a longer word, or actually explain why it was changed? Doubtful. I still know people who call it adult-onset! Very annoying.

  8. Well written, Meri. I've read so many posts and opinions on this in the past weeks... such an emotional issue for so many of us. Interesting to see all the different perspectives. At the end of the day, though, it's about our community working together in ways that make a difference. So, here's to that.

  9. "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."

    That sums up how I feel about it.

  10. I'm not exactly sold on the idea that it would make a difference... and if it did, we wouldn't see it in out lifetime. Besides... would that mean that WEEEE would have to change the names of our blogs??? That would be messed up!!

  11. While I applaud the efforts behind the name change, I have to say I agree....a different name isn't going to educate the general public on the differences. Sadly and unfortunately, most of the general population doesn't care about things that don't effect them personally. That coupled with the ignorant media and ignorant medical community spreading misconceptions......sigh.....Maybe if every major TV station, radio station, newspaper, and magazine all came together and shared a clear concise easy to read description on type 1 and type 2....and ran it every hour on the hour every day for a month....maybe then people would hear us.....maybe....

  12. Interesting commentary Meri. I have a different perspective coming as I do as a woman who neither has either disease nor has a child with it. Supposedly I'm one of the masses that would get this education.

    FWIW I have known that their were two different types of Diabetes for many years (although it wasn't until recently that I understood more the differences between the two types). Growing up my Grandmother had Type 2 so I had a bit of knowledge about that type, but I also knew that "Juvenile" Diabetes existed and that the two were common but not the same.

    Personally though I think that changing the name could possibly help identify easier which type people are talking about. I'll admit to constantly forgetting which is which because the names are so similar. By renaming it maybe it'd be easier to distinguish between the two which might help people understand that people affected with Type 1 will live with this for the rest of their lives, they won't be able to just lose weight to control it, and that maybe we should work to get some funding to help figure out what really causes it so we can cure it.

    To put a different spin on it, it's like the difference between Autism and Aspergers (a type of autism). I have two cousins that are autistic. One has Aspergers. He is currently a young adult graduating college and besides being a bit socially ackward (and a few other small issues) you would never know that he wasn't "normal." On the other hand, I have a 3 year old cousin who is Autistic. He is more similar to what people think of as autistic. He does not speak and we're hoping that one day he will be high functioning enough to have a job. Most people are starting to understand the difference between having Aspergers and Autism. They are really the same disease, but the name has helped to change people's perspectives.

    Just MHO.

  13. You Rock! Thanks for taking a stand, having a clear opinion, being willing to share it and accepting the opinion of others gracefully - a rare combination my friend!

  14. super clear thoughts, great points, and written with passion. I agree completely.

    Stupid mom? uh... nope, not even close.

  15. Speaking of...Ella asked me the other day if she watched too much TV before she was diagnosed. She had heard the Kaiser Permanente "Fight Obesity" commercial where they say, "Any opportunity we have to get kids off the couch is one that can prevent things like heart disease and diabetes.” I've called Kaiser and asked that they change the ad to say, "Type 2 diabetes" since Type 1 diabetes isn't preventable. I am just one voice. Won't you join me? Here’s the link to the National and State Media Offices

  16. I believe that you have missed the purpose of the petition. A short reading of just the beginning should make it clear that we are NOT petitioning to changed the name of Diabetes. We certainly realize that is ridiculous. We are petitioning to revise the name of BOTH T1 AND T2 to names that actually reflect the true nature of each condition. Our goal is to benefit both the T1&T2 communities and help protect our T1 children from the dangers caused by prevalent misconceptions. It is not about removing T1's association with T2. We understand that both are destructive diseases that are forms of D. We just want names for each type that specifically indicate the nature of each condition- something the numbers 1&2 do not. We believe this will benefit all of us through increased clarity in education and awareness, which in turn will facilitate better care and more productive fundraising towards improved treatments and a cure. We feel that the key to all diabetes campaigns is education and that designating the types by something other than a vague number, would provide much needed clarity to enhance this process. No, it won't make the disease go away and change will not happen overnight, but distinct names that do a little education just in their terminology will pave the way for better education and awareness, which in turn will aid in treatment, diagnosis, and funding for a cure. The numbers 1&2 do nothing but contribute to confusion.

    This is an opportunity for both groups to re-educate regarding their particular "type" of diabetes. We believe that with a descriptive and meaningful name for T1, in which the nature is indicated with words such as autoimmune and Beta Cell death, the word diabetes would likely be dropped from common discussions even though it is still a form of D. The media has inadvertently attached the word "diabetes" to T2 and that will likely not change with a name revision, but having it indicated with the words like insulin resistance could help dispel some of the myths and stigma that surround that condition. Our hope for T2′s is that they take a name revisions such as Insulin Resistance D (IRD) and use it as a platform to explain that the resistance is what has resulted in D, but there are so many factors that can lead to insulin resistance. Our hope is that they publicize the fact that the resistance can be attributed to lifestyle, BUT it isn’t always- that other factors such as genetics, bio-chemical reactions, and POCS can play a role.

  17. Hi Meri. I was pleased to find all of your concerns opposing the petition are the very reasons why Jamie Perez and I put it in place. CONCERN: people think it is the same thing. They are confused because most of the free world doesn't even know that T1 exists. They are confused because the media lumps them all together and does not distinguish between the two. REPLY: Yes, and this is the biggest reason for name revision. Because of the media’s lack of differentiating type & because T2 represents 90% of diabetics, the name “Diabetes” has become synonymous with T2. I don’t think this will change w a name revision. So why do it? For a small group, doesn’t a unique name help us to identify ourselves? Beta Cell Apoptosis Diabetes BCA would eventually be synonymous with T1, the number “1” by itself has no way of ever achieving this. So when the media continues to talk about ‘diabetes’ it will be assumed to be T2 or Insulin Resistant Diabetes. When the few shows that discuss T1, or Beta Cell Apoptosis Diabetes BCA are viewed, there’s the chance to be memorable with a name, not a “1”. CONCERN: As parents of T1 Children, we are so quick to tell people our kids are not Type 2, we end up throwing the T2 Community under the bus which only leads to facilitating the stereotype we are so adamant to debunk. REPLY: If T1’s didn’t have to exhaust themselves explaining the difference of the “1” & the “2” before even getting to the Awareness & Education part, maybe we could use that time to advocate for stomping the stigma of Type 2. Now we’re so desperately in need of clarification, who has the time? CONCERN: Deep down though, I really think that education is the real issue. REPLY: I couldn’t agree more but these much needed & appreciated Awareness & Educational campaigns can not reach their full potential because after all their efforts are said and done, the public is still left with a number “1” or “2” and they simply mix the numbers up. Number classification to identify the types has failed - name classification is needed. I tried to explain to baseball moms about my son’s disease last week and this week they still can’t remember if my son has the 1 or the 2. If I had the ability to say, “My son has Beta Cell Apoptosis”, I think the Beta Cell part would resonate with them and over time, I’m sure it would. The 1 and 2 is the whole reason for the civil war, the confusion, etc. It really comes down the these silly little numbers that someone thought would be sufficient enough to identify these two diseases. I’m sorry - not good enough. CONCERN: But if we simply change the name...all the work we've put in is going to be gone. REPLY: The Diabetes name remains, we’re just trying to make it easier for people to resonate with a ‘type’ name instead of number. I don’t see how this relates to the work we’ve done being taken away. The work will continue and even escalate as we demystify the public. In conclusion, one thing is clear - what happens at onset: Beta Cell Apoptosis (T1) & Insulin Resistance (T2). Type 2 can lose 'some' b-cells over time but this is not the reason for it’s onset. While we don’t know what exactly what triggers diabetes, we do know what happens at the onset and this isn’t going to change with any future research. These names are sustainable and that’s what we were looking for in a name suggestion. We wish to convey that we wish both types to remain in the family of Diabetes but with more distinction in their type classification - the number classification has failed. and... when I eat my potatoes, I prefer Idaho to Fingerlings. Or is that Type 1 potato and Type 2 potato. Yeah, they’re all potatoes but most people remember the names of the main types. If potatoes were numbered, people would just say potato and never refer to the numbers. Sorry, I couldn’t resist.

  18. Meri, your perspective is always so interesting to read and see that you have many valid points, especially your point about the misconceptions perpetrated by the media. However, I actually think I am one of those people that would like a totally different name for Type 1 diabetes. A few years back a friend's child became very sick with a disease no one had ever heard of. We were all like, "what's that?". I'm still not sure what it was, but I did know that it was serious. I did know that I would never in a million years suggest that if they just didn't eat sugar (or whatever) they would get better. The thing is, with a different name, even without the education about the disease it would give us parents of Type 1 kids a chance to educate people. If there reaction to a new name was, "What's that?", then we have a chance to explain what it is. It opens the doorway to explaining that our child has a major organ in his body that doesn't work properly. As it stands now, when we say "Type 1 diabetes", everyone just assumes that if they don't eat sugar they will be fine. I would prefer the "What's that?" response, and thus vote in favor of a new name.

  19. I've seen some of the chatter around FB about this, but haven't delved into it at all.
    I appreciate your post and have to say I was nodding my head in agreement pretty much the whole time. Then you went and made Ron White pop up in my head with the whole 'public' thing and I got distracted. ;)
    I can see how this has sparked some controversy and division...and that's the last thing we need, not matter what type (number or letters) of D you live and deal with.
    Bottom line, we have to educate and nothing is going to change the need for that.

  20. To make things even more confusing, there is also diabetes insipidus which is a fairly uncommon disorder of the pituitary gland which causes increased thirst and urination- just like diabetes mellitus!


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