I have been steamed all weekend over the latest "surveys" of medical organizations about the epidemic of Diabetes. My mind has been going over the possible names for MY "diabetes" and how frustrated I am about always being lumped in with Non Insulin dependent Diabetes.
My suggestion for the name of Type I Diabetes is Pancreatic Auto Immune Disorder (P.A.I.D.)
How do we get the name changed to better reflect the actual disease and make the steam stop coming out of my ears every time I am told to eat less and exercise more so that I can "cure" myself???
CLARIFICATION: This is the source of my latest bout with anger at the educational efforts of the diabetes community.
For what it is worth, I don't think that a name change is in our future--I just don't think it is reality. But it definitely is a problem that Type 1 diabetes is SO overshadowed by Type 2 diabetes, and it's not just irritating, but can be very dangerous when people get misdiagnosed due to wrong stereotypes. I do think that better education of the medical community, diabetes organizations (the American Diabetes Association really does a disservice to Type 1s in my opinion), and the public is important.
I agree with Melitta; I think education, not name change is the key. I already find myself saying that "I have Type 1...what used to be called Juvenile Diabetes.." And that lets me throw in some education about the original term being a nisnomer. I don't want to start saying, "I have x condition, that used to be called type 1, that used to be called juvenile diabetes!". New names will just lead to more confusion. And as for ROADA, uptowngirl, to me that just divides us into LADA and ROADA and takes more explanation. Seven years in, I don't bother with saying LADA, I just say Type 1 which is what I am, how I got here isn't important now. The only time I mention LADA is when I correct the assumption that I've had Type 1 since childhood or want to do a little education.
While I honestly agree with the name change, due to the fact that there's type confusion, I doubt it'd happen as it's been called diabetes for so long. Not to mention , I am starting to think that diabetes is not even able to be typed anymore and that it is a spectrum where just calling it diabetes and calling it a day sounds like a better option instead of trying to figure out types . The problem is the stigma, but due to the fact diabetes is becoming more of a spectrum , kind of makes me think just ditch the typing and try to fight the stigma on an individual basis? I just usually say I have diabetes and if I get asked what type or if someone tells me oh diet and exercise cures it or something I explain I have what is known as type 1 and it is autoimmune and I can do nothing to cure it and insulin is the only treatment, like while I appreciate their advice it won't help my diabetes. Like the typing also ignores people who have other types than 1 and 2. There's CFRD (Cystic Fibrosis Related Diabetes) , MODY (which is different than 2 but treated like it?) , NDM (neonatal diabetes, I think it is kinda like MODY?) , and there's genetic disorders that affect the pancreas and either have diabetes as a symptom or mimic it with pancreas damage. (I researched this a lot I was bored)
I'm kind of going off on a tangent here... But basically, I think the types are starting to become just cumbersome and more damaging than helpful because now kids are getting what is known as type 2 and what is known as type 1 is becoming more popular in adults, at least as far as I can tell. I don't think I'd have a type 1 adult (diagnosed with it around the same time as me last year even) in my class if it wasn't becoming more common (I'm also noticing a lot of newly diagnosed adult type 1 and Lada people online) . Not only that but the first line treatment for diabetes is becoming generally the same deal , at least with adults and SOME children because the lines between types are starting to seriously blur and even with testing it's VERY HARD to find out? Like I've kinda found most adults with type 1 or even what is considered LADA get put on metformin first and it's all dependent on how that works for them? I mean my classmate went through the same thing I did except she's still on metformin (but also on 2 shots of levemir a day) . Like sure there's clear cut cases , but it's becoming more common in general of all types where the lines are so blurred.
Sheryl - Last year, I supported the petition you refer to above. It was an emotional and divisive issue here. A large portion of the community weighed in on this and the sentiment was decidedly in favor of the T1/T2 status quo. While I still support the proper naming of the respective T1/T2 conditions, I don't think we as a community are interested in it, and I, for one, chose to move on and devote my energy and focus on things that can be changed.
I just wanted you to be aware that this was a hot-button issue that many here resented being raised. I agree with your rationale for renaming T1 into a more descriptive name. The T1 appellation needlessly adds confusion and makes education more difficult.
Things turned ugly last year when a prominent diabetes online site (not TuD!) chose to solicit online parodies of the initiative of the the two T1 petition moms. From my point of view, the solicited parodies mocked the good faith efforts of these two women.
I just wanted you to be aware of the recent history. I concluded that I prefer to steer clear of this issue. It almost caused me to terminate my participation here for good. I'm glad I didn't make that choice.
The thing is that type 2 can ALSO create life threatening situations , where if someone assumes that your child is not able to get them even with type 2 someone can. My mom works with someone who has type 2 and VERY FREQUENTLY has to get hauled out in an ambulance due to the fact her blood sugar shoots up into the 600's or more (she has told my mom she's tested above 600 , like I think one time mom said she was like in the 1000 mg/dLs? ) and she deals with HHS a lot (the type 2 equivalent to DKA from what I understand) . I legit don't know how this woman is still alive , it's like a medical miracle or something.
Sheryl - I've been T1D for 30 years. I get all your frustrations with the medical community's ignorance of what we T1Ds must endure.
This April 2013 post provides an extensive list of comments from this community. I encourage you to review it.
I support your idea but you might find it useful to familiarize yourself with the sentiment here if you want to write/comment further. This idea has merit and as such, it will not die. But to overcome embedded institutions, it will take more consensus within our community.
Movements for changes like this take spirited, informed, and inspired persistence. And that persistence will be measured in years.
This is not correct. Many Type 1's continue to make a small amount of insulin of their own for many years. The definition of Type 1 is that it's an autoimmune disorder, not that you make zero insulin. The antibodies attack the beta cells at varying rates.
Zoe is correct. And the other side of the coin is, many T2s (David holds up his hand) produce very very little insulin. My problem is not lack of insulin sensitivity (I am VERY sensitive to it). My problem is, lack of insulin.
Sometimes, particularly when we feel really strongly, it can be difficult to see the forest for the trees. IMHOP Manny places all of this in the correct context, in a blog he wrote last April.
Though not as sensitive to insulin as you, I, too, make very little insulin at this point - as to many "T2"s. My problem, too, is lack of insulin, and, due to the T2 diagnosis, an uphill battle to get access to the resources I need to better manage the disease.
The original statement about being tired of being told to eat less and exercise more to self-cure your diabetes applies equally to many (probably millions) or Type-2's as it does to Type-1. Neither diet nor exercise will help me in the long term, any more than it would someone with Type-1. Thankfully, my doctors recognized that and have treated me accordingly, but many have not been so lucky.
By any name, the misleading information in the media and much of the medical community needs to be corrected. However the combined voices of 26+ million (US) and over 300 million internationally can be a strong voice if combined. Separate voices are not an advantage.
If you want to eat any food you want, that is your choice. But anyone with diabetes struggles with being able to properly metabolize carbs, whether they are T1 or T2. And whether they have insulin deficiency or insulin resistance or both makes very little difference. In the end, we are all one community, driving for the same goals. Many of us, both T1 and T2 have suffered ignorance, misdiagnosis and mistreatment. Creating a new name for a type of diabetes won't change the situation, if anything it will marginalize things. In my ideal world, I want all diabetes to attract funding for proper management and cure. I don't think that will be achieved by divide and conquer, but by linking arms and singing that we all shall overcome.
Except it is faaaaaar from that clear cut. Some type 1's produce insulin, some type 2's don't produce much or any at all either but their diabetes isn't autoimmune in nature. Some type 1's are insulin resistant as well , though PROBABLY not as common, that can sure screw things up if you get diagnosed as an adult with diabetes and are insulin resistant but also have the signs of it being autoimmune. While it is different than not producing insulin, some people are both insulin deficient and insulin resistant. How someone's treated for their diabetes is also very different depending on a person. Some type 1's use metformin (with insulin of course) some type 2's use insulin alone without something else like metformin. The one thing about typing people with 1 or 2 with no if ands or buts , is that it might close off more adequate treatment for some people.
There's also social problems with veryyyy stringent typing. Not to say that typing is truly bad because it is likely still necessary despite the things I mentioned, but there's shame associated with type 2 diabetes that rubs off onto type 1's and it's also very common for even other type 1's to shame type 2's because they think it's the type 2's fault that diabetics are often treated negatively by society. It's society itself though, people who aren't willing to listen to diabetics and learn how diabetes works in general. It's not any diabetic's fault that this perception exists.
Basically I think all of the diabetes stigmas need to die off, and people need to be treated as individuals not based on their type alone and no one should be blamed for their diabetes and I don't think that requires a name change.
Beautifully stated, Brian!! I agree with your sentiment whole-heartedly :)
The mis-information that I find infuriating, and which I think it is incumbent upon all of us to clear up, regardless of what type we have, is the pervasive public belief that there is a "bad kind" and a "good" kind of diabetes, that some people brought it on themselves, that one kind only affects people who are overweight and the other only affects children... I don't think new names would change these perceptions. I think we need to speak out on our own and each other's behalf to educate those around us.
