Found this article on the web at endocrinetoday.com:
Mysteries remain in progress of Extreme T1 Diabetes
I was a little confused at first. What is "Extreme T1 diabetes"? It turns out, it seems to be an endocrinologist term for their diabetic patients that have lived with diabetes for 50 years or more. And the numbers are growing.
Maybe like extreme athletes, as we get up to grey hairs (or balding heads!) we are "pushing the envelope" of something. The envelope of endos knowledge if nothing else :-)
I think in the past on tudiabetes I had made the mistake of using the phrase "mild diabetes" in some misunderstood context. I am happy to know that in fact "Extreme Diabetes" is a term of the trade.
I find that kind of depressing ... When I've had Type 1 for 50 years I'll be 59 years old ... not exactly old!
Hopefully having Type 1 for 50+ years will start be normal soon and not the extreme ...
I have quite a few gray hairs, particularly during beard season...
"Extreme Diabetes" is not a term of the trade. It's a sensationalism used by someone to get an article published. I read a lot of journal articles and haven't seen it. My endo has never used it either and he has several of these "extreme" patients.
I thought it was a very interesting article and I hope to be one of the “extreme” Type 1’s who lives for more than 50 years after diagnosis. I do think that there is something that protects some of us more than others from the complications of diabetes.
I actually find this very interesting. There is still so much we don't know about T1D. Many of the folks who are in the 50-year club lived during a time when BG monitoring was impossible. They took one shot a day and, when A1C testing started, were often found to have A1Cs in the double digits. I know there has been some discussion about whether having measurable c-peptide reduces the rate of complications, regardless of BG control. If this is the case, a synthetic replica of c-peptide might help put more of us in this club with less of a focus on "control."
So how do we cook up our C-Peptides? Spinach? Fish oil? Jameson?
The term "extreme" diabetes is misleading. What if a 50+ year Type 1 diabetic is well controlled, and without complications. Is he still "extreme"? I do not understand terminology such as "brittle diabetic" either. "Uncontrolled" might be a better word for brittle, and "Long term" would be better than "extreme".
"Extreme" sounds like something that Snookie would say on "Jersey Shore"? Maybe it's a marketing thing?
You are a RIOT Acid... I will have my c-peptide with "fava beans and a little chianti( did I spell it right?)"- Hannibal Lechter.
I will be in the "50-Club" in 7 years...And I now have a reason that I am so "Extreme", which I have been called for reasons other than diabetes.(lol)
So thankful to have had minimal complications (some nerve tingling and tightness in feet and calves), everything else is A-0K.
I'm not a big fan of labels of any sort. Heck PWD for 50+ years are rock stars in my opinion! I hope I make it that long.
I have had D for over 50 years now, and it has not changed since I hit that mark in December. I think the label, if one is used, should be controlled! You don't make 50 without some extreme (LOL) effort!
I hope I live for 50 years after diagnosis. That would make me 88!
I like the way it sounds that numbers are growing, then maybe the term will change from "extreme" to just "normal". I would love the idea that if there is no cure there is treatments that brings longevity...
I hope for the same, I am sure that term was developed back when it was an extreme case and they just havent updated it. You know it takes forever for change to actually happen...sad
I had a great uncle who was one of Banting's child patients in the 1920s. He lived into his 70s on insulin with few complications. His initial prognosis had been that he had about 2-3 years to live; if he lived 5-6 years they thought that would be a major success.
Sadly, I didn't know him well or even live near him, but I remember him as an active, vibrant man. Occasionally, he would be invited to go somewhere or take special tests as part of studies into longevity, complications and so on.
I had a totally different reaction to the term "extreme diabetes" than a bunch of other folks! It didn't make me think of "brittle" diabetes (not my favorite term). Instead I thought of extreme sports, which made me think it's about being an elite diabetic. A truly AWESOME diabetic (sorry if my use of the word "diabetic" is rubbing anyone the wrong way. No offense intended, it's just shorter than the alternative). I actually felt kind of empowered by the term, because although I'm well shy of 50 years with diabetes, I do feel like managing the beasty take something of an "extreme" (read: elite, impressive, driven, committed) person.
No one in my world is using the word "extreme".
Apparently putting it in the title sells magazines, should it be called a "journal"?
The word wasn't used in the Joslin world either, once they got to that subject.
Yeah I know that's what I liked about the title. I wasn't sure at first whether "extreme diabetes" meant "the bad kind" or what. Just like you the "brittle" term of 30-50 years ago came right back. But after I appreciated the nature of "extreme" as a success and venturing into new territory - I latched onto it right away :-)