Petition for Disease Name Change


(plaidoe) #1

http://www.change.org/petitions/center-for-disease-control-change-the-name-of-type-1-diabetes-to-betazelltod-disease

 

This is a petition that I started to get Type 1 recognized as it's own disease. It is not the same disease as Type 2 and I believe that the medical and the public at large need to understand this. I believe that by being known as it's own disease, it is a step towards better education and better medical care.

 

Hollie


(system) #2

I congratulate your efforts to support something you feel so strongly about. It's always wonderful to have a cause you believe in.

I, however, wholeheartedly disagree with your campaign. When you get down to the basic roots of ALL types of diabetes (of which there are many - 7 that I count off the top of my head), they all have the same thing in common: abnormally elevated blood glucose. The type simply delineates the nature of the diabetes (autoimmune, metabolic, medication induced, etc.)

I posted a blog about this very subject here (cslifewithd.blogspot.com/.../whats-in-name.html). You are welcome to read it. Good luck on your endeavors. :o)


(Otenba) #3

I love the thinking, especially when knowledge about the types is more informed than perhaps it was when the names were given, but I think a change shouldn't just apply to one type considering there are so many. It'll seem odd to change Type 1 Diabetes and leave Type 2. To be honest, some of the types already have better names but that's just my opinion.

I wish you the best success. :)


(dadwithT1) #4

C...

regarding wholeheartedly disagree'...

It's nice that you could feel good about yourself on how 'fair' you are and I agree that people with all all types of diabetes have problems....  but I promise you your opinion will change as you  get older, start to experience the real issues that Type 1's face as they struggle with alone and misunderstood because of the lies perpetuated by organizations like the ADA and the way Type 1's have been abandoned and made to feel as outcasts by the ignorance of society and the complacency of the medical society and especially organisations like the JDRF and the ADA.

I'm 48 yrs. old, a executive in a large corporation...  I always thought I could handle my  disease, keep it to myself because it makes others around me squeamish with my shots and pump and blood tests.... I thought I could beat it... I have 3 kids, a wife that 'still cares' for me but asked me to understand why she left while I was in a coma and  petitioned the court to keep me being alone with my children because my Type 1 and the complications that go with it was 'not what she signed up for' when we married....  'it's better for the kids'.  I still see them every day... but there are countless abandoned others outcast and alone.

WAKE UP!!!   THIS IS THE FIRST TIME I AM ON THIS BOARD AND THE FIRST THING I NOTICE IS ALL THE UNANSWERED PLEASE FOR HELP BECAUSE THEY ARE ALONE AND SCARED!!

I recently awoke from a diabetic coma and the fist person I saw was a nurse checking my blood sugar...  I did not know where I was, how I got there but she consoled me by saying 'I know exactly what you are going through.... my CAT HAS DIABETES'!!!!  THAT WAS A NURSE!!

The comments like ... 'you don't have diabetes... you're too thin' and a countless other real life threatening issues I and every other Type 1 encounters has no equivalent in society....   People with AIDS get more support and acceptance... and they usually got the disease by their own actions... and they have a cure...  Type 1 has no cure and it will only get 10000 times worse as you age.

I face challenges every day caused by societies ignorance to this disease....  support groups are short lived because most adults don't have time and energy to attend never mind organize.

When I was younger there was no Type 2.... it can be cured in most cases by self discipline and diet...   but it's big $$$ for the  ADA.

Now we face the humiliation of having to change THE NAME OF OUR DISEASE...  not theirs... and every attempt is stopped by the well intentioned those like yourself and the ignorant and those who profit from the 'we're all in this together' name.

I am jaded...  my life and well being of my kids are threatened by how Type 1 is  misunderstood and maligned by ignorance.

I could give 1000 other examples...  unfortunately so will you as you age and the complications kick in....   and they will, no one escapes it.

Please don't condescend that you may know more about this disease or take care of yourself more than I...  

Type 1's need to stop hiding ...

THIS ESPECIALLY GOES FOR THE PARENTS OF YOUNG TYPE 1'S WHO THINK THEY HAVE  SUPPORT FROM THE JDRF now.   Note to Parents:   you won't always be there to check their sugar and watch over them and wait for their to be there...  Most adults think that JDRF becomes Type 2...    to them Juvenile Diabetes as the name suggests only affects those cute kids in their posters, surrounded by caring people ...  

and to C...  I was 22 once with Type 1.  The world was mine to conquer, didn't need sleep...  actually used the self dosing of insulin to my physical advantage and scoffed at the complications surrounding Type 1 cause... I was 22 going to live forever and could beat this disease.  I drank the koolaid I lived the dream...

In other words...  if you want to show everyone what a caring and charitable person you are, don't take down the people with problems you will one day face... My  GOD what a wretched misguided individual you are promoting yourself and how you are better that those misguided self pitying unwashed...  Go out and physically help 1 individual instead of blogging to promote yourself so you could feel good about yourself...  

To plaidoe....

only 999,985 to go?   hmmm, signed on but there aren't 10,000 without themselves or someone they love who even know what it is....    It is groups like the ADA and the JDRF who are failing us... and I wasn't always this bitter...   I spent months looking for help..   There are no groups... the JDRF only cares about cute kids for thier donation campaigns and the ADA.. needs to change their name to the Americans with Type 2 Diabetes Association  (AT2DA)... cause any call them is answered with 'oh... you have Type 1?  Did you try the JDRF?'  

Sincerely...

a Dad with T1


(dadwithT1) #5

C...

BTW:  I aplolagize for miusreading your profile, you're not 22, but have had type 1 for 22 years...  that nullifies just about everything I said towards you,I'm not a mean person and have nothing against anyone but I still have been subject to a lot of subtle and not so subtle discrimination based soley on ignorance and ... Type 1 is an autoimmune disease.....  without a cure and nearly 100 % fatal, it disrupts and destroyes lives ,,,  Type 2 ... I get upset when I go 3 days without getting to the gym and all most Type 2's have to do is lopwer theiur weight.  They don't go into coma's or lose feet or vision at 50...

Do you think a AIDS patient would be happy tobe in the same group as ... someone with an STD?  NO they are too different things...it's insulting..it's absurd!!  

AIDS has a lot more in common with Type 1 than .. well, what other autoimmune  is well known?  AIDS always killed it touched till recently , it was horrible and have firends who were taken by it.. but now it is easier and cheaper top deal with that Type 1...  

There is not 5% of the money and resources going into a cure for Type 1 as there was going into AIDS...  No one really cares but  your family and anumber ofEndocronologists and health workers.   Cause they are the only ones inthe world that knows what you and I  go through.

and again...look at these  boards... people asking for help, all alone...  no one is there for them...

I will not go down without a fight... I am fortunate, but think of all those suffering alone.... heck,  I'm alone in this, I came here looking for help...

adults with type 1 , careers, kids and everyday problems dont have time or energy to help others....  that is why the ADA and JDRF has turned its back ...  there is nothing out there for support and to be honest,,, twitter and facebook are not serious things, they are meant for children  and young socially warped individuals, not real people.  

BTW:  DO you know what the suicide rate is for Type 1's???   And especially if you take in account those who gave up with the daily grind of insulin??   My  Endocronologist gave me a number...  I believe if you get on to medscape on the internal medicine  site for physicians they have studies... would u be shocked if it were twice the general population???  What about 5X the rate???  Still to low?   Look at the boards and all those  here crying for help and no one answering at this... one of the top sites that exist, more people are on piratebay looking for ... animated foot fetish porn than at all the TYPE 1 blogs in the world.

But who cares cause if Type 1's are 1 % of the population with 10 times the suicide rate..  its still a very small number to the ... ADA  and AMA.  Type 2's have the same rate as the general populace.

but....  you can go on thinking we're one big unhappy bunch of victems or well, type 2's think they  are victems,the ones I know...   the ones who compared what they go thru to that of a 9 yr old boy with Type 1...

ANyway...   if there is anything learned from being here is ....  you better get the resources and strenght and will power to take care of yourself cause no one else will...

yes... I'm jaded and angry and sad for all those who will suffer alone because of this unheard of misunderstood disease...  I have to take care of my kids and I'm the lucky one of most here in that I have a rather large life insurance policy that is ...  the pillow I rest my mind on each night, plus I don'thave to save for retirement.

I'm not here to get angry  or fight with others but....  I didn't see anybody getting any help on a single one of this sparsely populated ...  whatever it is supposed tobe...

T1Dad


(system) #6

For the second time I managed to delete my entire response. One day, I'll figure out this whole "technology" thing.

Rather than typing out the entire thing for a third time, I'll just pick up where I left off: at the end.

I encourage you to engage in social media and the diabetes online community (DOC) rather than isolating yourself with your previous responses. Here are some resources that may help you do that:

DSMA (Diabetes Social Media Advocacy): diabetessocmed.com/about

-this group has a weekly Twitter chat every Wednesday at 9pm ET (8pm CST)

-join the chatroom here: http://tweetchat.com/room/dsma

-You can join the conversation or just read other's responses

TuDiabetes: http://www.tudiabetes.org

-a diabetes community made up of both type 1s and type 2s

Texting My Pancreas: www.textingmypancreas.com

-a blogger with type 1 diabetes who got her start right here on Juvenation a couple years ago

Six Until Me (SUM): http://sixuntilme.com/

-another blogger with type 1 diabetes who writes about everything, both funny and serious

Facebook group for Juvenation: www.facebook.com/.../272130558436

Facebrook group called "I hate diabetes (type 1): www.facebook.com/ihatediabetestype1

-created by another previous Juvenationer, Greg

And I'm about to send you a private message here on Juvenation so you realize just how alone you aren't. Don't ever feel like you're in this alone or that the world is out to get you. It's not. When you feel that way is when you have chosen to give up.


(system) #7

I can't send you private message. Fine, then. I'll type it all out. Again.

My life isn't perfect. Neither is my life with diabetes. I recognize the world isn't all sunshine and lollipops. I don't have rainbows sprouting out my butt either. I'm an alcoholic. I struggle day in and day out with chronic depression. Some days are better than others.

The only difference between you and me is that I chose to get help. I found support rather than dwelling on the state of my life. I have my times of screaming and yelling at the universe. But then I pick myself up and move on with my life. In a week and half I'm going to be laid off from my job and lose my health insurance benefits. I'm sure you recognize the importance of having health insurance when you live with diabetes.

When you choose to engage in the diabetes online community, you'll find out some crazy things. All of our struggles with diabetes are the same - whether you live with type 1 or type 2 - whether you're a parent of a child with diabetes or live with it yourself - whether you've had it for several decades or just a couple months. There are people who have done a lot more with their life with diabetes than you and they've only had it for a fraction of the amount of time you have. The difference? They chose to live.

You proved your diabetes ignorance over and over again in your responses, despite having lived with it yourself for many, many years. There is no cure for diabetes, even type 2. They might be able to control it through diet and exercise, but they'll still have diabetes. People like you who refuse to look past their bitterness and anger are the ones who further spread miscommunication. You want diabetes to be understood? You have to understand it for yourself first.

Get your facts straight. Stop spreading the lies and hate and then we'll talk. Your problem isn't that you hate type 2 diabetes. You hate yourself and your life with diabetes. Don't take your hatred out on an entire group of people who are undeserving of your criticisms. When you are free of sin, you can cast the first stone. I'd say you better walk away from your pile of rocks.

I'm sorry you're so jaded and angry. I'm sorry your wife left you. I'm sorry you've had so many hardships. I'm sorry diabetes hasn't presented you with the same opportunities it has for me. I'm sorry you're so bitter. I'm sorry you feel alone. I'm sorry you misinterpreted nearly everything I said in a couple small paragraphs. I'm sorry you took the liberty of judging me. I'm sorry you feel hurt rather than helped.

The world is a big place. You can choose to close some of those gaps by simply connecting with other around you - whether in real life or online. There is support out there. Find it. Don't fight it.


(ajacobs) #8

I've heard a lot of people wanting the name change so it is separate from Type 2. Nothing wrong with type 2 its just people get both so mixed up. Having different names could also allow both types to "reinvent" and "reteach" the world about the disease and maybe get rid of a lot of misunderstanding.

I'll be sharing this information with a lot of people, hopefully some will also agree and sign it.

Thanks for letting me know there was an actual petition about this!


(ryanwbrown) #9

To put my two cents in,

I agree that the mass confusion with the general term "Diabetes" is painfully annoying to say the least.

But I also see the valid point that Type 1 and Type 2 are in fact both a form of "Diabetes".

I find myself cringing every time I hear anyone talk about diabetes without specifying which Type they are talking about. Like the word "Diabetes" by itself describes that they are talking about. Like on Dr. Oz or something he will say that this and that will lead to diabetes.....and I blurt out loud "Type 2"!!! Clarify man! You are just adding to the mass confusion!!

If we can't change the official name of the disease, then could we at least start a new nickname or short name for it that doesn't have Diabetes in the name?  The need for better distinguishing Type 1 Diabetes from Type 2 is there. Type 2  owns the word Diabetes.  What can Type 1 own?


(sashabeeties) #10

Hollie,

I completely agree!!  With the wave of media around type 2 (the "diabetes epidemic"), we type 1's are getting lumped in with something that has little to do with us.  And we get lost in the shuffle.  I feel that people would have much greater understanding of type 1 if it weren't equated in the public mind with another extremely common condition.  I've thought a lot about what other names might be appropriate, but I've never found one that everyone likes... I guess you can't please everyone.

It's a bit silly, but my personal favorite option is "Hereditary Autoimmune Pancreatic Insufficiency"... (HAPI).  Mainly because it's fun to say "I have HAPI.".  Some don't like the use of the word "hereditary," because some people do get type 1 without any family history.  But I feel that since type 1 does happen on a genetic level, the condition is hereditary, so it's a valid use of the word.  I'm sure that a medical science person out there could come up with an excellent name.  Almost anything would be better than "diabetes," which is almost always misinterpreted as meaning "type 2" once you're an adult.

Also, having worked at a hospice, I saw first-hand how elderly patients (often unable to communicate for themselves) had "diabetes" written in their medical charts, with no clear understanding of what that meant.  In every case, the assumption was type 2 diabetes.  It was a bit scary to think of getting older, being vulnerable, and having medical staff start treating me for type 2... and stop treating me for type 1!  In my opinion, the media hype around "diabetes" (type 2 is implied in the use of the word) has made the name "diabetes" not useful for anyone with any other type.

Just my two cents.  I think a lot of people don't want to change the name, because of some monetary opportunism... there's so much money right now in "diabetes prevention and treatment," and people like to use the dire statistics around type 2 as a tool for getting funding for their type 1 related projects.  Personally, I'd rather be honest about what we're dealing with, instead of pretending to be part of something else.

Thanks for bringing it up!

Sasha


(ryanwbrown) #11

This is the best article I have found so far surrounding the name change issue. Really good stuff.

www.huffingtonpost.com/.../the-type-1-versus-type-2_b_611662.html


(ryanwbrown) #12

This exact topic has been on my mind quite a bit lately. So I found myself doing some research and putting thoughts together as I went. What I came up with is below, seems like a lot but if you have time to read, I'd love to hear your thoughts.

Mirriam-Webster Dictionary?
Definition of DIABETES?: any of various abnormal conditions characterized by the secretion and excretion of excessive amounts of urine

OK...so there are plenty of conditions that cause frequent urination.
Here is a list:
Bladder cancer
Bladder stones
Change in kidney function
Cystocele
Diabetes insipidus
Diuretics
Excess consumption of alcohol or caffeine
Interstitial cystitis
Kidney infection
Overactive bladder
Pregnancy
Prostate gland enlargement
Prostatitis
Radiation treatment affecting the pelvis or lower abdomen
Type 1 diabetes
Type 2 diabetes
Urinary incontinence
Urinary tract infection (UTI)

So I guess that’s why the word “Mellitus” was thrown in there. Diabetes Mellitus.
So I checked out the history of the words.

Origin of the words “Diabetes” & “Mellitus”
The term "diabetes" or "to pass through" was first used in 230 BCE by the Greek.
Ultimately, the word comes from Greek διαβα?νειν (diabainein), meaning "to pass through," which is composed of δια- (dia-), meaning "through" and βα?νειν (bainein), meaning "to go". The word "diabetes" is first recorded in English, in the form diabete, in a medical text written around 1425.
The word mellitus comes from the classical Latin word mellitus, meaning "mellite" (i.e. sweetened with honey; honey-sweet). The Latin word comes from mell-, which comes from mel, meaning "honey"; sweetness; pleasant thing, and the suffix -itus, whose meaning is the same as that of the English suffix "-ite". It was Thomas Willis who in 1675 added "mellitus" to the word "diabetes" as a designation for the disease, when he noticed the urine of a diabetic had a sweet taste (glycosuria). This sweet taste had been noticed in urine by the ancient Greeks, Chinese, Egyptians, Indians, and Persians.

So basically, Diabetes Mellitus means “Excessively Urinating Sweet Urine”?
Sure makes sense. But who is finding out that their urine is sweet these days? I know I know, Keytones. Just making a joke. No thank you. :)


Well, these days doctors don’t really Officially diagnose Type 1 Diabetes by determining that they frequently urinate and that their urine is sweet.  Diagnosis criteria today is based on blood glucose. Testing current glucose, fasting glucose, and the A1C test. So in a way, still identifying this disease based on how frequently and sugary my urine is seems a bit dated. Especially since this isn’t the way it’s confirmed anymore.  That’s one tidbit, but that all would still bucket Type 1 and Type 2 in the same general name. So here is where the differentiator comes in.

The C-Peptide test.
A C-peptide test measures the level of this peptide in the blood. It is generally found in amounts equal to insulin. C-peptide is found in amounts equal to insulin because insulin and C-peptide are linked when first made by the pancreas. The level of C-peptide in the blood can show how much insulin is being made by the pancreas. C-peptide does not affect the blood sugar level in the body. ?A C-peptide test can be done when diabetes has just been found and it is not clear whether type 1 diabetes or type 2 diabetes is present. A person whose pancreas does not make any insulin (type 1 diabetes) has a low level of insulin and C-peptide. A person with type 2 diabetes has a normal or high level of C-peptide.

There’s the physical, measurable difference in the disease because of the low peptide level in Type 1 and normal to high peptide level in Type 2. Type 1 Diabetes isn’t the only disease that has low peptide though. Non-Diabetic Hypoglycemia is out there, but it’s not an auto-immune disease. So there is a clear distinction there as well.

So to conclude, Type 1 can be set apart from Type 2 based on:?
1) Type 1 is an autoimmune disease. Type 2 is not.?
2) Type 1 Diabetics have low C-Peptide levels. Type 2 Diabetics have normal-high C-Peptide levels.


Could a new name for Type 1 be derived from these 2 clearly differentiating factors??
Autoimmune C-Peptide Deficiency Disease?
ACDD?

?I’m not a medical professional, just a passionate Type 1 Diabetic. So feel free to fact check or shoot me down on any of this, just looking for a real way we can get things changed. ?Any thoughts?


(LilmissTobi) #13

THANKYOU !

Do you seriously know how sick i am of hearing " Did you get diabetes cuz u wer/are fat ? "  since i was diagnosed which has almost been 2 yrs (even tho im perfectly skinny) SICK OF BEING COMPARED TO TYPE 2- DRIVES ME BONKERS


(khurt) #14

"ACDD"  sounds a lot like ADD


(AML127) #15

@LilmissTobi
I totally agree and the general public definitely doesn’t know the difference between types. Medical professionals often don’t seem to know the difference. I’ve argued medical professionals until I’m blue in the face that I’m a type one and have been for 32 years since I was in kindergarten. But they say NO you are an adult so you are type 2!!! Dumba$$ doctors and nurses drive me crazy. And they wint give you insulin if you’re an adult. They will only give t2d pills which do nothing for me as a t1d. It’s awful!


(Lisa) #16

I’m a mom with T1D. My ex-husband videoed me having low blood sugar during our divorce 3 years ago. He bullied me and manipulated my son. Now I am alone. I am so tired of this disease. Your words rang true to me. I remember working with a woman in the late 80’s whose son had just been diagnosed at age 16. She was all excited about the JDRF benefit in 1990. Their theme was “THE DECADE OF THE CURE”. I have come to believe that there is no incentive to cure this disease. During the 80’s I read a research article entitled ‘Mutliple injections - The Poor Man’s Pump’. I started giving myself multiple injections of regular insulin to control my TID, along with a low dose of Lente. My A1C was outstanding, but I was in my 20’s. Like you, I thought I could live forever. I tried to get into the DTTC trial, for the free test strips that I was paying for out of pocket, and they told me “we can’t learn anything from you”. Do you think there are any research trials to study people my age (56)? I doubt it. I am feeling very discouraged.


(Dennis J. Dacey, PWD) #17

Hi Lisa @lisabw26,
I too was “disqualified” from the DCCT Study because I was “too old and had had diabetes for too many years”.
But I was fortunate in beginning what is now referred to as MDI in the 1970’s under the guidance of a wonderful diabetes research doctor who wanted to get out of the lab occasionally and work with real live people instead of lab rats, rabbits and dogs. This was the same time period when I was a subject of glycosylated hemoglobin [now called HGB A1c] experiment. The doctor who was guiding me became on of the designers of the DCCT Study which was based somewhat on what I was doing and I benefited from what was being learned during the study and the insight of leading doctors around the country.

Now to answer the subject title: This autoimmune condition which we share has been identifies for 3,500 years and was given the very descriptive name “Diabetes Mellitus” [passing through sweetwater] 2,500 years ago so we should not seek to change the name. Probably if name changing should be done it would be to have the “non-autoimmune” varieties be restricted from using the DM designation; or at least have “diabetes” downplayed in conditions other than TypeOne. A good beginning point would be better education / re-education of those who use titles such as “Medical Doctor” or “MD”.


(sneathbupp) #18

Diabetes is …
Type 1 was the originally described diabetes mellitus.
Type 2 etc described later.
All these disorders are causing problems with glucose metabolism.
They are never going to change the name.