Wednesday, June 25, 2008

When will they change the name of this disease??.....

****Before I start I just wanted to say that we made it through the border crossing with no problems!! I didn't think we would, but you never know. The questions they ask seem so personal!! One of them my hubby wanted to say "That's none of your business.", but figured he shouldn't. Next time if it's possible I'll be sure to take a doc's note.****

I really want to vent a little about the name of this disease. It's so confusing when you talk to people. Most people....including me before J.J. was diagnosed....have no clue there is a difference between type 1 and type 2. But what torqued me tonight was when I opened my mail.

I opened a letter from the American Diabetes Association (ADA) and across the top in bold letters it said:

"There's already one cure for diabetes. Now help us find another."

Here I am thinking...."WHAT?? A CURE???"

I figured it was bait to get me to read the letter and ask for money. So I took the bait. I was interested. But as I read I just got angry. The ADA of all organizations should do their best to educate people about the differences in these two diseases....but the letter disgusted me.

This is the beginning of the letter:

Dear Friend of the American Diabetes Association,

One of the cures for diabetes is closer than you might think.

It's not in a research laboratory......not published in a prestigious medical journal.....and it hasn't been transplanted into the pancreas of a lab mouse.

No, one of the easiest and most effective cures for diabetes is right in front of you--it's your own two feet.

Research has shown that the best way to prevent diabetes is to make sure you never get it.

O.k.....by this time I didn't even want to read on!!! I am just staring at the word "prevent".....WHAT??? PREVENT??? I just hate seeing the dreaded "P" word when used in the same sentence with diabetes.....especially type 1. Just makes me want to spit.....and then cry.....if I could've prevented this disease from coming into our family and changing us all forever don't you think I would have???

Then my eyes hung on "MAKE SURE YOU NEVER GET IT." NEVER GET IT!! MAKE SURE!!!??

Now... I understand....and hopefully the people that read my blog understand that there is a difference between type 1 and type 2. BUT most people don't!!! And for the ADA to lump all diabetes patients with the one word "diabetes" just stinks!! There is only one mention that the letter may be written about type 2 diabetes and it just says "Even if you already have type 2 diabetes..."...blah, blah, blah. The rest of the letter has facts about how "diabetes" is on the rise...."every 21 seconds another person is diagnosed".....DIAGNOSED WITH WHAT? Type 1 or Type 2.

I know I've vented about this before and honestly this isn't a battle between type 1'ers and type 2'ers.....I don't know much about type 2, but I can sympathize....what I'm so frustrated about is the confusion that is brought about by having these two related, yet different diseases lumped under the term "diabetes"......and to have ADA not even distinguish.....now that is just sad (and maddening) to me!!

So please.....someone, somewhere come up with another NAME for this disease.....maybe we should hold a contest.......NAME THIS DISEASE PLEASE contest!!

14 comments:

Allison said...

The American Diabetes Association sucks.

George said...

I agree with Allison.

We do need a new name. I hate the confusion. People think I am diabetic because I am fat. grrr

Sue Blake said...

I have made it a mission to send corretions to media outlets when I hear them blurring the "diabetes" label. I am quick to point out the differences. I have a 15 year old dauther with the disease. Let's keep correcting and eduacating people along the way. We spoke to the school faculty this year.

Donna said...

Irritating, isn't it? It seems the ADA is so focused on type 2 that they forget there is a type 1. Sad...

Glad you made it through the border crossing okay. Whew!

watchdogonscience said...

Stop donating to the ADA and instead start your own non-profit to promote TYPE 1. These large non-profits like ADA are too powerful. They are part of the problem and not part of the solution regarding medical care. Good luck. Sorry for your frustration.

Lynnea said...

Wow!! Seems I'm not the only one that has a "little" disliking of ADA. I've never donated, but for some reason I'm on their "list".

But for me it's not just them...it's just about everyone I meet, unless they know someone up close with type 1. There is such a confusion about "diabetes"....so to me a name change is in order!!:-)

Anonymous said...

Hello. I am an staff person who works for the American Diabetes Association. I came across your blog and felt your frustration more than you may realize. Hoping to clear the air and provide a better understanding of the hard work we do on behalf of ALL people affected by diabetes. We are all affected. A child with type 1, parents and siblings, a mother/father/grandparent who is diagnosed with type 2 and the mother-to-be who has gestational diabetes and the complications that may arise to herself and child. Yes, we are all affected by diabetes.

As a staff person, we work so very hard 24/7 on behalf of all people who are affected by diabetes. It is not our direct intention to muddle the lines of those who are affected by type 1, type 2 and gestational diabetes as demonstrated by our educational programs, research grants, specific to type 1, type 2. The letter you describe, and how it was written, certainly would lead one to believe and feel as you do.

I have a staff member whose nephew was diagnosed with type 1 at the age of 1. Many ADA staff have type 1 diabetes and we experience everyday what you go through. Our work is not about power, it's about making a difference in the quality of life of all people who have diabetes as we search for a cure. There are so many great people who volunteer for ADA, who are passionate, want a cure and want to make a difference, they do not "suck" as one of your blog comments suggested. ADA is a volunteer organization. Truly led by volunteers from all walks of life. ADA works so very hard for children who have type 1 diabetes. Demonstrated by our Safe at School advocacy efforts. If a school nurse is not present at the school, and a child is having a low, other school personnel are not allowed to administer the insulin and to help that child. There was a mother whose child was having a low at aschool in California, literally on the floor passed out, needing immed. help, nurse was not at the school. They called the mom at work, she worked 1/2 an hour away, she had to drive to the school, saw her son on the floor and no one doing anything to help her son and administer his insulin. How very scary is that. We are working to get that changed in all schools, keeping our kids who have diabetes Safe at School. What about when the child becomes an adult. They do grow up. Discrimination in the work force for people who have diabetes (doesn't matter what type) is alive. One of your blog comments suggested not donating to the ADA, that's a very scary thought when you think about it in depth and the example I shared with you above.

We do know prevention is key for many type 2 diagnoses. Prevention is important. Preventing complications as we search for a cure for both types is very important too.

I could go on and on about the work ADA does specifically for type 1, type 2 and gestational diabetes. I encourage your readers to visit www.diabetes.org.

Again, I am so very sorry for the feelings the letter provoked. There is alot of confusion regarding diabetes. There's a lot of confusion on ADA and the work we do for you. We do make efforts every day to educated the difference. We work passionately on behalf of you, your child, your family and we are truly dedicated to the mission: to prevent and cure diabetes and to improve the lives of all people who are affected by diabetes.

We continue on...

Emma said...

"If a school nurse is not present at the school, and a child is having a low, other school personnel are not allowed to administer the insulin and to help that child."

"...she had to drive to the school, saw her son on the floor and no one doing anything to help her son and administer his insulin."

Oh yes, one of the biggest misconceptions.

If a child is having a low blood sugar, insulin should NOT be administered. Insulin lowers blood sugar.

That's one of the largest problems with the medical personnel at my school, and could have caused me serious problems more than once. (When I'm really low they suggest to me that I should "take a shot of insulin".)

Please, if you work for the ADA and don't have your facts right, how are other people supposed to learn from you?

Penny said...

Anon,

Sorry, but your comment made me even more uneasy about the ADA than I already was.

People with diabetes (both Type 1 and Type 2) DO NOT take insulin for a low blood sugar. They eat candy or drink juice.

To everyone else: How about pancreasnoworkosis as the new name?

Anonymous said...

To anonymous ADA staffer:

Nice try! I expect some ADA contributions go to formulate/produce a manual so staffers can spin the ADA propaganda.

You state ADA is a volunteer organization. Why, then, is your leader paid on a par with other corporate executives?

You state you are a volunteer organization. Why, then, is 25 cents of every dollar 'donated' reinvested in FUNDRAISING? Your two-star rating at charitynavigator.org does little to bolster your standing or commitment.

You state you (the ADA) is concerned about all diabetics. Why, then, when the FDA solicited comments about the future direction of diabetes management/treatment . . . ADA was absolutely silent. It couldn't be that, quite frankly, ADA doesn't care WHAT direction treatment takes? As long as the ADA can maintain their quasi-corporate power base, it doesn't really matter to them--EXCEPT, a CURE is not in their best interests.

Several years ago, a spokesperson for Eli Lilly admitted that "a cure does not fit our business model." At least THAT individual was honest.

Cara said...

ADA has always kind of been with the "masses". The majority of diabetics being Type 2, then always refer to them first.
It's sad, because those of us who are Type 1 are left out. Misunderstood.
If JJ could have stopped himself from getting diabetes, I bet he would have (even at his young age). And I can tell you I would have too.
But instead, here we are dealing with it while the general public goes uneducated about the differences in Type 1 and 2.

Anonymous said...

When the ADA volunteers do not know the difference between ketoacidosis and diabetic insulin shock (which is basic to survival), the uselessness of this organization is apparent. Another organization (JDRF) was founded more than 35 years for the very reasons we are talking about, in other words, parents with diabetic children (some of whom were diabetic themselves) also felt hopeless. Their mission was a CURE for Type 1. Sadly, the goal is no longer “around the corner” but rather “on the horizon.”

Just a little background: I have had this disease more than 50 years, and can only imagine (knowing what I do about today’s protocols) the sheer terror involved in managing blood glucose levels you must be experiencing. I recently spoke with a professor heading up a diabetes program at a major university. He told me that in some cases, today’s quick-acting insulins can actually lower blood glucose faster than the brain can recognize and send out response signals to the various endocrine systems meant to be counterregulatory. He had testified for a young man charged with vehicular homicide. He stated in court there was no such thing as hypoglycemia unawareness. Does anyone recognize the polarity in his two statements? Please consider the diametrically opposed claims in his two statements and consider that HE is considered a leaders in the diabetes community. Diabetes protocols are continuing to regress—putting especially the very young patient (and their parents) and teenagers in a much more precarious situation than needed.

If you consider the ADA a savior, please consider the possibility that the monies they receive from Cadbury, diet soda companies, specialty food products and, of course, the pharmaceutical industry all play a role in their therapeutic research drive. A fast-acting insulin that will cover post-parandial blood glucose of a bowl of ice cream or the wearing of a pump 24/7 may seem a step toward normalcy for a child. In truth, many of us older diabetics survived our grade school, high school and perhaps college years without a single, significant episode of hypoglycemia unawareness. Before we all become sheeple, patients need to organize, take to the streets and demand MORE from our healthcare system.
--Brent

Scott said...

For what it's worth, the American Diabetes Association is the organization which is single-handedly responsible for the current naming convention of type 1 vs. type 2.

In May 1995, an "international Expert Committee" sponsored by the American Diabetes Association was established to review the scientific literature published since 1979 and to decide if changes to the classification and diagnosis of diabetes were warranted. The Committee met on multiple occasions and circulated a draft report of their findings and preliminary recommendations to the international diabetes community. In 2003, the Committee discussed and revised numerous drafts of a manuscript that culminated in this published document. (Diabetes Care, 26:S5-S20, 2003).

They wrote "the etiology and pathogenesis of diabetes has led many individuals and groups in the diabetes community to express the need for a revision of the nomenclature, diagnostic criteria, and classification of diabetes. As a consequence, it was deemed essential to develop an appropriate, uniform terminology and a functional, working classification of diabetes that reflects the current knowledge about the disease."

The big question, of course, is whether the committee's objective. We changed from a naming convention driven by treatment therapeutic (insulin-dependent vs. non insulin-dependent), but my own feeling is that giving it a random "type" number when the etiology is unrelated in each condition has created more confusion rather than less, and again, the ADA has been at fault for that too, by doing almost no public relations on the matter over the past decade, while simultaneously claiming that diabetes (type 2) has become epidemic as well as claiming how close they are to a cure (for type 1, witness their public response to the Edmonton Protocol, which was largely funded not by the ADA but the Juvenile Diabetes Research Foundation).

Most of us believe that the ADA has done a very poor job, and does not represents the interests of people with type 1 diabetes at all, and does a lousy job for type 2 as well.

Brett said...

Yes I think that comment about administering insuling to someone experiencing a low blood sugar pretty much tells you everything you need to know about ADA.

The differences between Type 1 and Type 2 could not be any more stark - in one case it is typically young children who extract a horrible disease through no fault of their own.

In another case it is a lifestyle disease...

And thats what drives a lot of the frustration. People get Type 2 because of their own lifestyle choices (or lack thereof).

I would not ever give a penny to ADA. I would give every penny to the JDRF.

Don't get me wrong, I would not wish Type 2 Diabetes on anybody either...but then again they bring it on through their own decisions and choices.

Related Posts Plugin for WordPress, Blogger...