For some odd reason, I got swatted twice today by people who have strong opinions on diabetes terminology.
First, I offended someone when I made a distinction between classic, sudden onset Type 1 in adults and LADA. I want to know what’s wrong with calling yourself Type 1 and feeling like an accepted member of the Type 1 community when you’re diagnosed in, or close to DKA after a very short period of onset, even if you’re over or WELL over the age of 21? Why not acknowledge that people with LADA have very serious problems of their own, which ARE different from those who have a classic onset?
Second, I got told that if you’re a TRUE Type 1, you don’t have problems with weight gain from insulin. So I want to know what is a true Type 1? And what is a false Type 1?
And while I’m ranting – maybe it’s time for another name change for JDRF. There is NOTHING “juvenile” about Type 1 diabetes – nowadays, people are living with it far longer as adults than as children. Maybe they should call themselves T1DRF. It would be more accurate, and would educate the public better. Type 1 diabetics don’t disappear just because they become adults.
OK, rant mode off, but I had to get it off my chest.
I was diagnosed with diabetes at 57 and my medical record says T1. While I may have had a latent autoimmune disorder, no one ever picked it up during a medical exam so who knows. All I know is that I was diagnosed with ketones in my urine and my first finger stick was 425.
I eat about 160 net carbs per day not counting any vegetables which probably means that I eat about 200 carbs the way most people here count so I’m staying out of the low carb discussion. I am an example that low carb isn’t necessary but maybe its just that I’m a freak.
I wouldn’t have a really strong opinion about diabtes terminology since medical science doesn’t have a strong opinion about it. Same thing about JDRF, they have a name, they have an organization and they raise money. I suspect we are better off with them than without them?
This is just personal opinion, but I do think there is a difference between Type 1 (sudden onset) and LADA (slow-onset Type 1). But I may be saying that just because I relate more to the former group than the latter. I do think that people with LADA tend to produce insulin for MUCH longer periods of time (even if not much) that might help with control for years. I may be wrong with that, but if you look at A1c results on this site, the LADA folks often have much lower numbers than those diagnosed as children, and in my mind that might be one reason why. But maybe there is another reason for that, too. Both groups still have Type 1, though, just different forms, I guess.
In regards to the weight gain thing, that’s not true at all. I’m about as “true” a Type 1 as you can get if you are talking about “true” as in “classic.” I was diagnosed at age 9, with only a few weeks of intense symptoms, with very high BG and large amounts of ketones, and was sent to the hospital immediately and put on insulin. And I’m overweight! Maybe not from the insulin, exactly, but the insulin and/or diabetes is definitely making it MUCH harder to lose weight than for people I see who don’t have diabetes. I know a few others who were diagnosed with Type 1 as teens and have problems with weight.
I actually think the types should be tossed completely and diabetes could be classified based on whether it was autoimmune, metabolic, or a combination of both. Then you could qualify those with rapid onset or slow onset or whatever, and as more is discovered add on more precise classifications. Some forms of diabetes like MODY don’t even fit into the type model so I’m not sure why it’s even used when there are more than two types to begin with!
I agree that JDRF should change its name, but I also don’t think it’s that big a deal. There are lots of organizations that raise money for kids with cancer, but that doesn’t mean that kids are the only ones who get cancer, of course! I think that JDRF and other children-focused organizations (like Children with Diabetes) are starting to get better at recognizing that there is a need for support among adult Type 1s, though. All these organizations were founded by parents of kids with Type 1, so it’s understandable why that would be their sole focus at first; but now the kids are adults, so they are realizing that there is a need. One reason I’ve heard for JDRF not changing their name is that the name is “familiar” to donors and changing it would require a huge effort to re-establish themselves with the new name. I don’t know anything about fundraising so have no idea whether that’s true or not.
Doc used the term " diabetes " , when diagnosed in early 1983 …and so did I , when I asked him , if I had D. …and I needed insulin …the tests showed .So I can’t give much of an insight about " what’s type 1 " …
I am on insulin and have not gained weight .TRUE not False …you made me laugh about your second paragraph …I hope you accept my response and giggle as well
JDRF is an abbreviation of a name of group , started by parents of children with d way back …; had the Foundation been started by parents of adults with diabetes, it likely would have ended up with a totally different organizational name
I should issue a disclaimer on the JDRF issue too, as I did a walk last weekend, supporting my friends’ daughter, who was dx’ed at 18 months and will be 3 in a month. It was fun.
I recall there was some brouhaha that parents of CWD were pissed that they modified their mission to include working for better treatment, along with a cure, there was an expletive filled thread on some other message board that I found sort of shocking after the “country club” atmosphere here and at the other board I hung out at. I must be getting old as it wasn’t a “selling point” for me any more?
My endo actually asked me what type I was last week. I had to answer that “I have no idea, I was diagnosed as a T2.” And while I know that there are some of us who believe that there are distinct groups, and that T1s are not like T2s and vice versa, I think that is total baloney. We all suffer from a cluster of conditions, with multiple dimensions. Some of us produce very little insulin, some are insulin resistant. Some of us have various defects in the signaling. Some of us even have a variety of other comorbid problems, other autoimmune conditions, complications, even vitamin D deficiency.
In the end, we are all “individuals.” I think for all of us, our own diabetes is unique.
And as for the JDRF, they focused on children because that helped them raise money. Few of us would look at Maurie and feel sympathy and give money, now when we see a little child diagnosed with T1, the money spills out of our pockets (no offense Maurie).
From an adult perspective, I like the fiduciary arguments about the cost of all types of diabetes lumped together. Everyone who is a health care consumer, including beneficiaries of government benefits should understand that diabetes is the most expensive disease, hands down. Heart disease could perhaps give us a run for our collective money but, given that heart disease involves a giant 1) diabetes component and 2) is engaged with the obesity epidemic, I think that you could argue that curing diabetes would have a large impact on the overall cost of our health care. I don’t think that penny pinching on treatments helps very much and is a huge opportunity area although I am disinclined to do any research to prove my suspicion?
I also like the cluster paradigm although I would suggest that expansion to cluster&*%$ might be appropriate?
I was diagnosed in November of 2008 at the age of 58 as T2, put on oral meds, and I put myself on an extremely low carb regimen to try and “beat” this. Oral meds did nothing, and in January of 2009 at the age of 59 was diagnosed as T1. My PC sent me to the local diabetes center to train me on insulin injections, and they just referred to me as T1. Their definition was, insulin resistant, T2, insulin dependent, T1. I never heard of LADA until I started cruising the T1 message boards. I am very low carb as this seems to work the best for me, and I have very good control.
I avoid having people tick me off by keeping this condition to myself. Other than my medical people, only two other people know that I have it, and one found out by accident. I don’t have to defend myself, listen to horror stories or well-meaning advice, no matter how off-base it is. I want to continue being the same old Sue that I always was in other people’s eyes and this has been working fine for me. Maybe one day I will want to share, who knows? But, I still consider myself a rookie; January 20 will only be my 3rd anniversary.
When you look at diabetes from a therapy point of view, the difference is in how much insulin your pancreas still produces.
So you have Type 1, LADA and Type 2 insulin dependent, Type 2.
When you look at diabetes from a (future) cure point of view the difference is if your pancreas died for an autoimmune attack or for some sort of body disorder.
The autoimmune factor is important even when you look at linked deseases , which are different for type 1 + LADA or for type 2.
I look at diabetes as an effect, but the causes are perhaps many more of what we now know.
Somebody as diabetes because has no pancreas at all (by chirurgy (?sorry for my english)), and is a Type 1 for the therapy, but could have staminal cells one day with no autoimmune problem.
As for JDRF, I read the thread acidrock23 talks about and learned the origin of JDRF.
The name of JDRF has historic reasons and nowadays is something different and bigger.
But I think that a parent could go to hell to cure his child, when the same person as an adult could stand his fate.
Perhaps thats why JDRF was founded by parents, and R stands for Research.
I’m a parent and my daughter was diagnosed at 14 months: as of today a hope in artificial pancreas for a better quality of life in her teens.
But i agree that if foundations do not invest (a great part of) money in base research for a cure, nobody does.
I was 24 when I was diagnosed – that was at the end of the age bracket when they used the terms “juvenile” and “adult” onset. Mine was fast onset. The person that made the comment “true type 1” is a slow onset. If I wanted to be picky about terms, I could say that she is not a true type 1. My aunt was in her late 40s/early 50s when she was diagnosed and hers was also very fast onset. What does that make her? She doesn’t fit the LADA term because it was fast. Is she more of a true type 1 than the person that made the statement? I have a friend that was diagnosed when she was 2 – I think she is in her 40s now. She has struggled with weight problems. What does that make her? Is she not a true Type 1 because she is overweight?
What I have learned is that there is no black and white. There are a lot of people that don’t fit into the standard definitions – probably more of that “type” than the people that do. I personally don’t give a rat’s a** what type someone is. I come here to learn and to help people. I have learned just as much from Type 2’s and from weird types as I have from Type 1s. People with chips on their shoulders usually are not open to learning. It is better to make one comment just so someone new coming along doesn’t think what they said is true and then walk away. I know it is hard sometimes but it is better not to let them get to you. At the end of the day, you are a better person than they are. You are here to help and learn like most of us are. You have been a big help to plenty of people, including me.
I think the LADA experience is probably very different than those of us who were diagnosed as kids as T1.
In particular navigating the health care system as a young adult is far more difficult that typical pediatric care. Having gotten excellent diabetes care as a kid and then finding no care available in my 20’s I really do identify with many of the difficulties that LADA folks have.
There’s also (again me thinking back to the attitudes 30 or 50 years ago) still a stigma with full-blown diabetes and LADA may sometimes be used as a qualifier to try to distinguish it from “fully baked” diabetes. I’m throwing this out there in the Dustin-Hoffman-in-the-Graduate sense of “it’s not half baked, it’s fully baked!” and being a little sardonic.
I think one major difference between late onset Type 1 with or without a residual trickle of insulin and a traditional early onset is time. I was diagnosed at 57. I figure if I can make 25-30 years with only modest complications I’ve “won”. A 20 year old who starts having complications at 30 years post faces a much tougher road.
The other element of late diagnosis is that we’ve been diagnosed NOW. There are pumps, fancy insulins, CGMs available. A 57 year old diagnosed 30 years ago probably had a few years without even a meter.
I absolutely agree, Maurie, and don’t want to downplay the more difficult road of dealing with type 1 as a child and adolescent and having that many more years to develop complications.
But I am personally finding this discussion extremely frustrating. I refer to myself sometimes as LADA/Type 1, but I usually don’t bother with the LADA part. Why? Two simple reasons: few people (including medical personnel) have heard of it (and embarrassing doctors is never a good policy). Second: because in my medical records I am Type 1, in my pump information I am type 1. I was diagnosed four years ago and I make very little insulin if any today. In my everyday management (and struggles) I am indistinguishable from any other Type 1. (Try the blind taste test!).
I started a Type 1 Women’s support group in my area. In that group are women from age 20-65. We were diagnosed as children, adolescents and adults. We had sudden onset and slower onset. We are all Type 1’s and everything we talk about can be related to by all. (Ok, I can’t relate when pregnancy is the topic!)
Natalie, I always enjoy all your posts and very much respect your opinion. But I have to respectfully beg to differ on this one. You jokingly talk about “true type 1’s” and “false type 1’s” but when you make such a big distinction between slow onset type 1’s and sudden onset type 1’s (or juvenile onset and adult onset?) you are setting up one group “LADA” as “false” or second class citizens. The only difference is in the rate of onset and sometimes the age (and yes, there are more adult onset than child onset).
Zoe, I did not see the first comment that Natalie referred to but I did see the 2nd one. It wasn’t Natalie that made the statement, it was someone else that used the term “true Type 1” and basically told Natalie that she doesn’t know what she was talking about because she is not a true Type 1 - those were the person’s words, not Natalies and certainly not mine.
I apologize for bundling all those terms together, Kelly. But I feel that the second paragraph is almost ironic in its defense of an adult onset type 1 as “a member of the type 1 community” but then going ahead and implying that LADA’s are not.
I understand Zoe, my point is that it is not Natalie that is implying that - she was upset over someone else’s comment. The other person’s comment bothered me also so I understand where you are coming from.
I agree with Maurie re: complications. During the time in which a LADA is honeymooning there are distinct differences.
Other than that, in my mind, there is not one bit of difference except when it happens. Now that I write that I realize both could bring a whole different set of “problems” being diagnosed older vs younger as far as assimilation into the disease. Being diagnosed later isn’t necessarily “easier” just different. As far as weight gain? Not a single bit of difference in my mind.
JDRF continues to be JDRF because little kids pull on the purse strings of people that otherwise do not know and could probably care less about Type 1 diabetes. So long as we get the funding we need for research JDRF can continue to call themselves JDRF as far as I am concerned. Educating the public at large is a hopeless cause. However, any “provider” whether GP, endo or whatever SHOULD know the difference.
The one difference that I can think of regarding weight gain, MD, is that older people (especially post-menopausal women) are more subject to weight gain than younger. But that isn’t really a LADA/classic type 1 distinction as people diagnosed as children (hopefully!) age.
I also want to comment on what someone said about LADA’s having better A1C’s. Personally, I’m not entirely sure that’s true as I know people of all types (and all ages) with better A1C’s than me, and others with worse ones. I think a whole lot of variables contribute to glucose control. But someone else mentioned that people diagnosed more recently (and most LADA’s fit into this category) have benefited from access to superior resources and knowledge from first diagnosis, and that very much includes the DOC which might possibly be one of the greatest factors in good control!
As for the JDRF, the name bothered me at first, but I now agree that whatever brings in the research dollars is good. I do notice that some branches (usually in major metropolitan areas) now have significant services and outreach to adults while others are still geared mostly to children. This boggles my mind as where do they think all those children go?
