How can we get a new name for T1??...seriously...

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How can we get a new name for T1??...seriously...

Postby jellybean » Fri Jul 11, 2008 9:28 pm

Hi,

I can't find a current thread on this topic so I hope I'm not doubling up.

Over the years there has been a lot of mention about changing the name of T1, some quite serious, otherwise with some funny suggestions!

Seriously, I know we should be focussing on a cure, but maybe the spotlight won't shine brightly enough until T1 is completely disassociated to T2 (no more comparisons to obesity, no exercise, yada yada...). By giving it a more appropriate name, maybe more funds will be made available for research, more people will donate etc...it's ridiculous to think that we need to change the name to gain more awareness, but hey whatever works!

What if my kids end up with this disease too? do they have to spend the next 20/30/40years explaining that they do eat right and exercise, that there isnt a cure decades later because nobody took notice due to the bad rep the label "diabetes" has?

Kate/Mel...do you know where we would have to submit such an idea? is it the World Health Org, or is it just something we do locally in Oz?

Has this already been tried? I mean they changed it from Juvenille D because it didn't accurately represent everyone with T1, why not update it again to leave out the word "diabetes" altogether?

I'm just over it, the media, the public, even the family's perception...I would prefer to explain what T1 is for a change, rather than what its not...
Jellybean
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Postby nirvana » Sun Jul 13, 2008 5:26 pm

I was just thinking about this today, after reading yet another article which didn't differentiate between T1 and T2 and simply said obesity causes diabetes..

I suppose the downside to changing the name would be losing the established reaction that it has with people, regardless of whether they know about the different types or not, i think in general people still know its serious and that helps with getting donations to diabetes related organisations and things like that

But i really think that as time goes on, and obesity rates increase in the western world, T1 will be completely drowned out by T2, we are barely even mentioned by places like Diabetes Australia now, what will it be like in 50 years? I think for the sake of helping T1's with better treatments and eventually a cure, it needs to have its name changed, and the sooner the better...
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Postby jellybean » Sun Jul 13, 2008 5:51 pm

I should have asked the question in my original post : does anyone else feel this way?? instead of assuming everyone is feeling the way i am.

Again there is another news report just aired on ten news on National Diabetes week...they differentiated by stating "type 2" a couple of times...but again Type 1 is not mentioned, which you would think both would get discussed...is it only National Type 2 Diabetes week?

we couldn't be more invisible if we tried.

I completely agree with you, Nirvana, that as far as Diabetes Australia is concerned, they couldn't be bothered campaigning for T1D's.
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Postby mfcr06 » Mon Jul 14, 2008 4:42 pm

Absolutely agree 100% jellybean.

Although I wouldnt have a clue where to start.........perhaps the W.H.O.???

I believe that there would be heaps of support for a name change though.

What would T1D be known as though?????
Fiona - T1D Mum of Blue and Pink
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Postby artemis » Mon Jul 14, 2008 5:18 pm

mfcr06 wrote:What would T1D be known as though?????

Autoimmune Beta Cell Fallure - AIBCF?
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Postby Kezza » Mon Jul 14, 2008 5:48 pm

Autoimmune Langerhans Failure - ALF? ;)

To be more serious, I also agree entirely. It's probably going to be tough, but could be possible. Getting people to agree on a name could be difficult too.
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Postby Henry » Tue Jul 15, 2008 3:49 pm

Hi... First of all I must say that I'm one of those who gets annoyed as much as anyone here about being confused with a type 2 diabetic... (ie. no, it wasn't my lifestyle that gave me this...)

On the other hand, have anyone considered that if suddently type 1 wasn't diabetes anymore we would suddently become a very rare desease as opposed to a major and well known medical condition?

I mean, to be fair, T1s get a lot of benefit from research originally done for T2s... like in the case of Lantus and Levemir...

Just wondering whether the annoyance if worth the benefits or not...

Cheers,

Henry.-
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Postby jellybean » Wed Jul 16, 2008 6:34 am

finding a name and being happy with it would definitely be a tough one...it just needs to be accurate and to the point. i might ask my endo when i see him on saturday to see what he thinks.

Henry i think you make a valid point to.

there has to be something done to put us on the map. i'm not a scientist but honestly would any attention or research being done for type 2 directly help T1's in most cases? unless they accidentally stumbled onto something maybe... their focus is on a completely different area of the disease and its causes...
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Postby Catapult » Wed Jul 16, 2008 10:06 am

We might be considered lucky in that we get research done on complication prevention and treatment because of the sheer number of T2s getting them. If it were only us T1s who got comps, I don't think anyone would be bothering to research complications as the numbers would be too few.

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Postby jellybean » Wed Jul 16, 2008 9:22 pm

I agree Cat, the complications side of things works in favour for us, I guess i meant more in relation to a cure where the triggers & results are different.

Here's part of the spiel on DA's website, which forms part of the new "Diabetes in Families Campaign" for National Diabetes Week: http://diabetesaction.com.au/diabetesau ... ityid=4039


The main goals of the NDAP (National Diabetes Action Program) are as follows:

1. Increasing community awareness of type 2 diabetes as a serious medical condition

2. Increasing community awareness of perceived susceptibility of type 2 diabetes

3. Increasing community understanding that type 2 diabetes can be prevented

4. Increasing community access to quality information, support and services that have a type 2 diabetes prevention focus.


I realise that we, as T1's, have insider knowledge on what type 2 diabetes is, but i think the "community" at large are more than aware of type 2 diabetes, how you get it, and that it can be prevented...it's on at least one news or a current affairs program somewhere in Australia once a week, let alone the tv ads...where's the TV ad for type 1??

I'm not saying that they shouldn't campaign for type 2, of course they should, but the campaigning for us needs to be stepped up. National Diabetes Week is getting attention, therefore it should discuss both types. People then donate to DA because of the campaign week and how much of the $ get spent on Type 1 research? I wouldn't think a lot, if any.

A number of times on DA's website is the statement "Type 1 diabetes is not caused by lifestyle factors and cannot be prevented." At a quick glance it was on 3 pages. Good that they state this, but that's about it, following this sentence is paragraphs of information for Type 2. Again, where's the focus? DA is more known to the general public, JDRF isn't as well known, so we need DA to support both sides of diabetes.

I feel like i am rambling and probably am...sorry! i'm really needing to vent about this. I realise i am not personally going to be able to change any of this, (I'm not hypo :P haha!), just speaking my mind to a secret world of people who understanding what the hell I'm going on about...
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Postby nirvana » Sun Aug 03, 2008 8:36 am

Just reading the Sydney Morning Herald this morning, i've come across a perfect example of why changing the name would be a great idea..

http://www.smh.com.au/news/health/state ... e=fullpage

The entire article fails to specify the difference between type 1 and 2, and it is constantly stated that simply 'diabetes' is a result of obesity..

I e-mailed them about it, it would be good if they change it to be a bit more factual, i'm not holding my breath though

Anyway, at the very least i think that Diabetes Australia should recognise that this is a problem within the media, and set up some kind of complaint system so that media outlets are contacted by them officially, i figure since its an established organisation they would have a better chance at changing the way the media reports on diabetes...
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Postby Erin » Sun Aug 10, 2008 1:17 am

I've felt for some time that a name change was in order. But then again, Henry's point is well taken, we do benefit somewhat from being connected with a common condition (type 2).

I just thought of something though, what if we kept the diabetes part of the name, and changed the type 1 and type 2 part. We could replace the numbers with more descriptive terms. How about Autoimmune Diabetes, and Metabolic Diabetes. Or I guess we could let the T2's keep just plain old Diabetes as their name, but we have Autoimmune Diabetes. This way even people with limited medical knowledge, say the kind they get from watching Grey's Anatomy, would know that Type 1 was the kind skinny kids get because of their immune system is acting up.

I think the problem is, that unless you have type 1, the numbers have little meaning. Even my endo messes up sometimes and says type 2 when she means type 1. (she knows very well that I have autoimmune diabetes, but will occasionally say the wrong number out of force of habit... there are just more people with type 2 out there).

How to go about getting the name changed, that's another story altogether. I think it would take years and would be really messy.
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Postby Anne » Sun Aug 10, 2008 7:50 am

Erin,
good names but T1 can be due to non immune causes too, like infection, cancer etc. It is often assumed to be autoimmune but most of the time the cause cannot be confirmed and is not even investigated. Having lots of smaller groups to detail all the T1 would just make it more confusing and less 'important' in number.

I like the old 'insulin dependent' and 'non insulin dependent' version, it does not try to separate the T2s who became insulin dependent from the T1s but in a way, does it matter much? We all end up having to test and inject, once we are on insulin.

Saying that I don't want to be mistaken for a T2 but have nothing against them either and don't get very upset by it all, I just have diabetes, that's enough info for the world. D is a bugger, whatever the type.

But if my own doctor could not tell the difference, he/she would not see me twice.
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Postby Erin » Wed Aug 20, 2008 3:49 am

Anne wrote:But if my own doctor could not tell the difference, he/she would not see me twice.


My doc is pretty awesome. The times she's made the verbal mistake it's always been very clear that she has just mis-spoken. Once she was actually contacting the CDE to set up a pre-pump meeting for me, and said I had type 2. Then she turned all red because both me and the CDE were like "WHAT??!" and she corrected herself.

If she started suggesting treatment options that were geared towards T2 then I'd never darken her doorstep again.
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Postby Anne » Thu Aug 21, 2008 9:05 am

Well, we all make mis-speaking mistakes, I guess. What irritates me is the mixing up by not knowing any better.
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Postby Erin » Thu Aug 21, 2008 1:24 pm

Yeah, i guess that was what i was trying to get at. It's hard for joe-public to know any better when it's diabetes 1 and diabetes 2. I don't know the difference between hepatitis A, B and C. (trying desperately to come up with another disease that has variable types)

The numbers/letters don't have any meaning if you're not familiar with the disorder.
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Postby terryleew » Fri Aug 22, 2008 9:46 pm

How about chronic diabetes mellitus, and behavioural diabetes...or is that too cyncial?
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Postby artemis » Sat Aug 23, 2008 5:42 pm

terryleew wrote:How about chronic diabetes mellitus, and behavioural diabetes...or is that too cyncial?

Maybe too simplistic (as far as T2 is c oncerned).
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Postby fletchba » Mon Aug 25, 2008 5:42 pm

Henry wrote:Hi... First of all I must say that I'm one of those who gets annoyed as much as anyone here about being confused with a type 2 diabetic... (ie. no, it wasn't my lifestyle that gave me this...)

On the other hand, have anyone considered that if suddently type 1 wasn't diabetes anymore we would suddently become a very rare desease as opposed to a major and well known medical condition?

I mean, to be fair, T1s get a lot of benefit from research originally done for T2s... like in the case of Lantus and Levemir...

Just wondering whether the annoyance if worth the benefits or not...

Cheers,

Henry.-


Regardless of what we call it, T1D will still benefit from from any research that crosses the boundary.

What about calling it the Peoples Islets of Langerhans Front! The PILF!
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Postby terryleew » Wed Aug 27, 2008 7:20 pm

Classic. Altogether now, "we are all individuals"..."we are just naughty little diabetics".

;-)
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Type 1 media misconception/name change debate...

Postby MissUnderstoodType » Thu Sep 11, 2008 10:18 pm

Hi my name is Gina - regarding the T1 name change debate, here's my take on it, for what it's worth...

In 2007, Diabetes Australia (head office - ACT) with the help of Govt funding, enlisted a PR company to relaunch the DA brand and alert the community through media releases and ad campaigns, of rising Type 2 numbers, because it is costing the Govt too much in the health budget. T2 has always been the largest group (850,000), while T1 is in the minority with a measly 120,000 of us.

However, the correct type of diabetes was conveniently or unintentionally (depending on how cynical you are) left out of media releases. Hence, lazy journos (all apologies to my good friends who are journos), simply read out what was on the press release. The PR company was only doing it's job. So were the media, who were dictated the issues of rising obesity causing diabetes, and covered it extensively, (stories claiming that we can "prevent" diabetes, sold newspapers and got the tv ratings up tenfold).

My other point is, where was the equivalent amount of money spent on T1 diabetes? NOWHERE. I am not having a go at DA (well, maybe just a little), but merely pointing out why and how this misconception in the community has been perpetuated in recent years. And it's not going away. The message has been created. The damage has been done.

DA's "awareness" campaigns do not help T1D. In fact the national website for DA relaunched in 2007, showed a new logo. Have you seen it? It's an arrow in a semi-circle shape (designed to illustrate, (and I quote the publicist here), "how we can turn around diabetes!") What? Turn around diabetes? If only we COULD turn around T1 diabetes! Silly us for not eating healthier and living better lifestyles when we were 10!!!! ;-(!

So Type 2 has replaced Type 1's urgency for a cure with "you can prevent diabetes"! Let's rally together and get the media, health professionals, celebrities, (in fact just everyone you know) to simply PREFACE "diabetes" with the correct "type" of diabetes when referring to it. Simple.

To change the name is unfortunately just way too hard, (can you imagine the task of changing it worldwide?). But then again who, when and how did it change from "Juvenile diabetes", or "Insulin dependent diabetes mellitus" (IDDM for short)? If we send out a media release to absolutely everyone, along with all our stories and even signatures (a petition maybe?), imagine what we will achieve? Possibly an earlier cure? We're almost keeping this illness (T1D) alive, by being so healthy, capable and high achieving young adults (old in my case), despite our UNpreventable type of diabetes! Remember that saying, "It's the squeaky wheel that gets fixed."!

Nowadays, I can't even sit down and relax without reading a paper, watching TV or listening to radio without some report about the "obesity epidemic/junkfood diet/couch potato lifestyles/weight control/lack of exercise all causing 'diabetes'". Can't they just say Type 2 diabetes? Can't they just stop showing the same tired old images of fat people eating hot chips in the street? Can't they do their research?

I'll leave you with some gems triggered by the diabetes stigma that's now so prevalent in our society........"Oh, you look too healthy to be diabetic!", "Oh, do you inject insulin - you must have it really bad then?", "Oh, you have diabetes, but you're not fat?", "Is it in the family?", "My grandmother just got diagnosed, she was just too fat", and my fave one from well meaning but misinformed colleagues at work ................"Should you be eating that?" Arrrgh!

Gina.
Type 1 for 32 years, (recently had a kidney/pancreas transplant and am currently compiling a book on my experiences as a T1D since 1976) I will not let the last 32 years have been in vain, and I intend to see a CURE in my lifetime (!), and particularly, an END to this ridiculous media concentration on Type 2. I don't want others younger than myself to go through what I went through.
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Postby kdemonj » Wed Oct 01, 2008 12:03 am

Personally I like 'Insulin Dependant Diabetes Mellitus' and IDDM for short. It seems when you tell people that you are on insulin they get the difference pretty quickly...but...

I agree that a name that is completely different from T2 so that they are not associated easily with each other would be more appropriate. It would stop confusing the public, the poor jurnos, and the health professionals such as GP's and nurses (who really should know the difference but we can't expect too much from them now).

Maybe even more funding would be donated by both the public and the corporates when the stigma that is associated with T2 (disease caused by lifestyle) is completlely removed from T1.

There use to be so much being done to promote awareness for T1 but I haven't seen any really in the last year or so - it has all been replaced by T2 awareness campaigns. That is great for T2, it needs to be addressed. But not at our expense.
Kate - wife, mother, student...obviously a little crazy!
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Postby Mel » Thu Oct 02, 2008 6:06 pm

Personally I like 'Insulin Dependant Diabetes Mellitus' and IDDM for short. It seems when you tell people that you are on insulin they get the difference pretty quickly...but...


I disagree completely, a large part of the confusion in labelling is due to the fact that so many type 2s are on insulin, they're not technically insulin dependant but that is a very subtle distinction and many medicos, let alone the general public fail to recognise the difference.
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name change debate

Postby MissUnderstoodType » Fri Oct 03, 2008 1:01 pm

Correct Mel
That is the hugest problem - that because the average Type 2 (some of them, grant it, have a "hereditary disposition" to get it), but I stress , most of them, are putting SO much strain on their poor overworked pancreas trying to deal with their "lifestyle" illness that they NEED insulin! These people are the very ones who have confused GPs, journos, and even the specialist medical profession themselves! It'sfrustrating, I know, but I really do believe we just need to make sure everyone refers to a certain TYPE before they utter the word "diabetes". Doesn't matter if they don't know which type means what, they can find that out if they are interested enough! The Hollow Men episode (on ABC 17/09/08)? was about marketing a new drug for diabetes, and drew a beautiful analogy where the Rob Sitch character was aked "Is there any difference?" (between the 2 types?) and he answered with "I think Type 2's the one you cause yourself"!!! I love him! ;-)
Gina
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name change debate

Postby MissUnderstoodType » Fri Oct 03, 2008 1:19 pm

Henry and Fletchba
As far as I know (correct me if I am wrong), but I am not aware of any Type 2 awareness helping Type 1 research.
I am only aware of the (Type 1) JDRF funding that the Garvan Institute got, and then, discovered Lantus/ (and later Levemir from funding by a profit hungry drug company)...nothing to do with Type2 research, which if you look into the DA (or the JDRF) annual reports respectively, you will see that any benefits to T1D was as a direct result of funding from the Type 1 community (& JDRF), and NOT the Type 2 community (DA), who are concentrating on PREVENTION, as it is costing the Govt too much money!
But I welcome any evidence to disprove that...;-)
Gina
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Postby Argeaux » Tue Oct 07, 2008 11:08 pm

Like Gina, I've also been diagnosed with Type 1 diabetes for the past 32 years. I don't have any complications yet, for reasons which astound me.

If you want to understand why governments make certain decisions, you need to grasp this concept.

Governments make decisions based on majorities, because they get elected by majorities.

Type 2 has been given a big drive over Type 1 because:

* there are more people diagnosed with Type 2 than Type 1. The more the government does for people with Type 2, the more votes they can court.

* the fact that Type 2 is manageable, and in some cases preventable, means that a bigger focus on it saves the government money. Money saved on subsidies for injecting supplies, tablets, etc. means money that can be spent elsewhere to court more votes, eg. education.

Why Type 1 often gets ignored for policy and funding:

* governments usually aren't interested in the needs of minorities that don't bring any perceived benefit for the majority. For example, a national apology to indigenous people in this country, which consitute about 1 percent of the population, was very popular with a large number of non-indigenous Australians. Most Aussies who don't have anyone diagnosed with Type 1 diabetes in their immediate family don't give a stuff whether or not a cure is found. That is the majority of Australians.

* Type 1 diabetes is not as public a killer as diseases like cancer, and in many cases is more viably managed. There is only so much money to go around, so governments must choose where it goes. Giving it to cancer research will garner them more votes than diabetes Type 1 research.

I'm not saying all of this is fair. I'm saying this is how it is.

Life is unfair.

If you want to get the attention of governments you need to figure out how your cause will get them more votes. In particular, how your cause will get them more votes than other causes.
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