A New Name for Diabetes PLEASE!

[janabelle]

Am I the only type-1 who gets frustrated about the ignorance and mis-reporting of diabetes?? I have been type-1 for 19 years and have noticed, that despite Diabetes UK(previously the BDA) "awareness week" over the years, it seems to me there is more ignorance surrounding diabetes than ever before. The recent DiabetesUK campaign, suggesting if your waist size is above a certain measurement,it could indicate diabetes is a prime example. I feel the failure to make the distinction between type-1 and type-2 leads not only the general public to be confused, but also GPs.
They are two completely different conditions with different causes and treatments, even if the long term health implications are the same. I feel very strongly that if these conditions were given a different name, there would be far less confusion. It's not rocket science, and do I hate that cliche!
I'm racking my brain to think of new names for both conditions. Anyone got any suggestions??
Does anyone else have the same view?
Jus

 

[sugarless sue]

You could have JOD and MOD..Juvenile onset diabetes and Mature onset diabetes.The trouble is talking about diabetes 2 is 'fashionable ' at the moment and it invades the national psyche so that the mention of the word 'diabetes' triggers all this talk of obesity,lifestyle disease etc.

 

[janabelle]

Hi Sue, not heard these terms used in years, doubt many "new" diabetics ever have!
Why do DiabetesUk not make this distinction and use these terms in their campaigns??
Also if the general public were more aware of the dangers that people on insulin(mostly type-1s) live with day to day, we may feel safer if a crisis occurs. Maybe the new names should relate to whether the patient is on insulin or oral mediaction. Anyone got any better ideas plz??
I'm too knackered to think of any just now, I'll sleep on it.
Night :wink:
Jus

 

[ally5555]

wow that is like a blast from the past!!

 

[sugarless sue]

Well I am old! :cry:

 

[Nellie]

Its more complicated than just type 1 and 2.
There are MODY, (Maturity Onset Diabetes of the Young which you can develop at any age !)
LADA (AKA 1.5) or slow onset type 1 usually after age 25
gestational
those people who develop diabetes because of certain drugs or other conditions.


Personally, I found JD and MOD dangerous names because I associated them with type 1 and type 2 and before diagnosis shared the publics misconceptions about them. I 'knew I had diabetes but didn't go to a doctor with my symptoms because I thought that the 'serious' type of diabetes(JD/type 1) only occured in young people and started abruptly. I therefore must have MOD/type2 and not very severe since I was thin, ate healthily and exercised and I obviously wasn't suffering from DKA. (that took 3 years from onset)
I was in my 50s. ....you try explaining it even to some people who 'know' about diabetes. In spite of being less than 7 stone at the time,I came out of hospital and met someone who said 'you must have been eating too much of our good French Food' :roll:


They used the terms IDDM and NIDM before type 1 and 2 but that didn't make clear the causes as people with type 2 can become insulin dependent.

Insulin sensitive and insulin resistant diabetes? but then there are people who start out insulin sensitive but develop resistance ..

 

[TROUBR]

Not a serious suggestion but I have been trying to teach my 3 (nearly 4) year old son the name of what I have in case something happens when we are out and he needs to tell someone and he calls it "diasweeties". Little does he understand the irony! Anyway that is what we now call it at home!

Incidentally, I rather like the term Juvenile Diabetes having just been diagnosed at 38 it rather sadly amuses me to be referred to as Juvenile! When I was in hospital I had assumed I was type 2 given as you say the info out in the public domain re being overweight etc - I didn't realise until later the real distinction between the to and that having DKA meant that I was almost certainly type 1 and that there was no clear cause.

 

[Sweet3x]

Not a serious suggestion but I have been trying to teach my 3 (nearly 4) year old son the name of what I have in case something happens when we are out and he needs to tell someone and he calls it "diasweeties". Little does he understand the irony! Anyway that is what we now call it at home!

That's so cute!

 

[donnamum]

I'm getting fed up with people thinking I have force fed my daughter chocolates and sweets over the past few years which has resulted in diabetes. As they think its linked to obesity. Again its fastionable to be type 2 and over weight. Not Type one with a healthy lifestyle......maybe thats why we get so little suport.

 

[IrishJoe]

at the moment being recently diagnosed I'm having a simplistic view : type 2 = self inflicted type 1 = pancreas explodes/goes on strike etc.

not 100% fair but I dont want to start pondering the ins and outs yet as I am trying to cope with my new condition (as I'm told its not a disese)

 

[janabelle]

Welcome to the forum Joe, fellow celt!
I've been on insulin for 19 years, and it ain't all misery and doom-you'll soon get your head around it.
Yes ur names are a bit harsh- but sure there are some patients and medics that would agree, though it is more complicated than that- you wouldn't know it from what we hear on telly and read in papers and campaigns.
I had some problems getting prescriptions for testing strips at my last GP surgery. The snotty receptionist asked me "why I needed so many test strips"- she was type-2. She even had the cheek to say that the new policy that all diabeteics had to see the practice nurse before been given test strips, was because diabetics had been "abusing the system"! Ignorant old xxxxx. My new GP is lovely and the receptionist is not a jumped up little hitler-thank god!
As with your experience Donna, people can be stupid and unwittingly cruel, but Diabetes UK especially could pull their finger out and be more responsible when it comes to reporting.

Jus

 

[sixfoot]

Hi all , can i humble suggest that you read the Carbs thread if you havnt already. It explores the reasons why T1`s and T2`s can pile on the Pounds. Some is what you ingest Some is what you are told.

Diabetes is persistent you must be too.
Dave P

 

[hanadr]

I don't think you can change the name of a metabolic condition as easily as a plant. worlwide every health professional needs to know what they are dealing with. Trouble is that the press are now equating diabetes with "retribution" for being overweight. In other words, it's our own fault.
that to me is the bigger battle.
I'm an overweight type 2.Classic?? But I always tried to lose weight. I made the mistake of thinking that the medics knew what they were talking about and that low fat would work, which it didn't.
I now know that I have several metabolic problems, probably brought about by illness and it's treatment in childhood. Had I known about low carb, I could have avaoided this, BUT I am not "reaping what I sowed" I amnot to be blamed.

 

[janabelle]

Of course getting type-2 is not your fault-but that's what these ad campaigns imply. Not every overweight person will develop diabetes. In fact just because there is a relationship between type-2 and being overweight does not mean that one causes the other,just that this is what statistics show. There may be an underlying condition that causes both, and that is prob what needs looking into. Do type-2s become not diabetic if they lose weight? I have Retinitis Pigmentosa, and when I tell people I have sight degeneration, they usually presume it's related to my diabetes. It is not. People can have cancer, arthritis and a broken leg- it does not mean one problem bears any relation to any of the others.
Diabetes UK should know better, their campaign that if your waist measurement is over a certain number, you could be diabetic, only reinforces peoples misconceptions. This sort of scare-mongering only serves to add to the misconceptions that already exist not only about type-2, but also the difference between type-1 and type-2. Could it all tied in with government cost-cutting? -If the public perception is that diabetics cause their own condition by being overweight, there will be less opposition by the general public and prescribing teams,to diabetics paying for their own treatment eg. testing strips.
Maybe a change of labelling for these conditions is too simplistic an idea, but I feel it is needed to help promote better understanding of diabetes, whatever type.
I'm still stumped when it comes to names though, but watch this space!
Jus

 

[lionrampant]

The public perception has always been "oh you ate too many sweets so you got diabetes". The current culture of "if you get fat you'll get type 2" has just given this misconception fresh life, especially when (as this thread points out) the majority of people know ****** all about the differences between type 1 and 2 - they just hear "diabeetus!".

 

[pixie]

i have type 1 and my husband calls me a "smellibetic"

oh, and janabelle, that receptionist who told you that diabetics were abusing the system....my god, what a cow....like we just LOOOVE to prick our fingers more times a day than necessary

you should get your finger pricker out and go to work on her face!! :x

 

[janabelle]

What a lovely idea, she's a snotty self-righteous old cow!! Then I might go to work on the **** GPs who've treated me like a dog for 4 years! That receptionist prob thinks all us diabetics are sadistic self-harmers- we just love drawing blood don't we?? AAAHH don't tempt me!
I have so much anger towards them,and I did give the finger to the surgery as I cycled by the other day-feeble I know, but it made me feel so much better, and I'm well rid.
Sorry if the wording in this posting offends anyone else other than the people mentioned above! :wink:
Jus

 

[LittleSue]

This really winds me up, too.

Working as a medical secretary in respiratory medicine, and previously cardiology, have come across many patients with diabetes as well. Winds me up when doctors dictate "non-insulin-dependent diabetes - on insulin". Just taking it for kicks, then? Or worse they go on about steroids without even mentioning the diabetes and probably without thinking about the implications for BS control because their last 10 letters haven't mentioned it either.

Wondered about saying I have Auto-Immune Diabetes (AID) but people might misconstrue. Immune Assault Diabetes or Immune Mediated Diabetes and Insulin Resistance Diabetes? Still mentions the D word but puts the aetiology to the fore. Or maybe Beta Cell Destruction. Type 2 could also be covered by Pancreatic Insufficiency but that usually refers to lack of other pancreatic substances and is treated with different drugs.

I agree Diabetes UK could do more about this. I've tried bombarding the BBC with emails when they've done yet another news item that mentions diabetes and obesity in one breath without qualifying it. They probably think I'm just a crank now. (Last time after my email about the style/inaccuracy of their media items about diabetes, they decided to switch their programme to type II-only and put a picture of 2 fat peole on the web page. Duh!)

My mum says I'm diabolical. I think she started this after I was diagnosed...

Sue

 

[IrishJoe]

the whole 'you're fat so it severs you right' attitude of people does annoy me. I am quick to point out that mine is the randomly get it for no reason type so that they dont have an opportunity to judge me incorrectly in thier ignorance.

I had some problems getting prescriptions for testing strips at my last GP surgery. The snotty receptionist asked me "why I needed so many test strips"- she was type-2. She even had the cheek to say that the new policy that all diabeteics had to see the practice nurse before been given test strips, was because diabetics had been "abusing the system"! Ignorant old xxxxx. My new GP is lovely and the receptionist is not a jumped up little hitler-thank god!
As with your experience Donna, people can be stupid and unwittingly cruel, but Diabetes UK especially could pull their finger out and be more responsible when it comes to reporting.

Ouch ! Thankfully my GP and Pharmacist are quite nice esp since I'm type one. I'm told that 'they are nice to type 1's ' Presumably because if you have type 2 THEN ITS ALL YOUR FAULT (obviously its not but it seems to be the mentality)
Also do type 2s not have to test BMs (thats the abbrevation for blood glucose I think - basal metabolic something or other ?? ) less than type 1s ? I know I have to test 4 times per day. Sometimes 5 or maybe 6 if I've had a hypo (1 to test and 1 after to make sure its ok).

 

[lionrampant]

Auto-Immune Diabetes (AID) but people might misconstrue

YA THINK?!

Doctor: "I'm sorry, but it seems you have AID"
Patient: "Oh god... but... wha... oh god no!"
Doctor: "Yes you're going to have to watch your diet very carefully, and insulin injections are a must."
Patient: "Wait... what?"