I have been type 1 for 68 years, and I do not have any serious diabetes related complications. While participating in the Joslin medalist type 1 study in Boston, I was told that several participants freely admitted that they do not take good care of themselves, and they eat a lot of food containing sugar, and other fast acting carbs. Despite their bad eating habits, they do not have any complications after many years of type 1. All of the 900+ participants have been type 1 for at least 50 years, and are US citizens. I was also told by the lady in charge during my participation that several participants had used tight control, but have still experienced some serious complications. These are that exceptions to the rule. The majority of the participants in this study have done at least reasonably well with their control, and they do not have any serious complications.
In the Joslin Medalist Study, Dr. King did discuss the "special inner protection" that so many medalists have. He said that this mysterious protection seems to protect us against serious problems with our eyes, kidneys, and our nervous systems,,,,but not our hearts. He wanted us to know that we should take every precaution to keep our hearts healthy. There is a secret group on Facebook called "The Joslin Medalists" where many members have posted about their stents, bypass surgeries, heart attacks, etc...but these same people have good eyesight and healthy kidneys.
After almost 60 years of type 1, I was diagnosed with spots of retinopathy, and neuropathy. My A1c had been in the range 5.4-6.0 for many years, but I still had these complications. My control involved too many highs and lows, a roller coaster type of control. Those highs and lows can produce an average which is quite good, so the A1c will also be good. That can give us a sense of false security. The roller coaster control is traumatic to our bodies, and complications can result, even though the A1c is good. I started pumping insulin in 2007, and my control was much more stable, with not so many highs and lows. The retinopathy disappeared, and has been gone for seven years. The neuropathy is still present, but it rarely bothers me now. Avoiding complications seems to require a good A1c, and more stability with not so many highs and lows. If I had started pumping in the 1990's I may not have had any complications at all.
I read an article a few years ago that said the life expectancy of young type 1 diabetics in the US is almost as good as for non diabetics. That is very encouraging news!!
Hi Richard! I am so happy to see you. And yes, it's me the trouble maker from that other place :)
I was just thinking how cool it is that you and the "other" Richard dude (Dr. B) have been diabetic for the same amount of time, and how different your experiences are. I have read both books and found yours to be more real. One of those books is in fact dear to me! I do know that both of you are well and sans complications, so YAY.
I wonder as you have suggested in other writings if the older insulins may have provided some protection that the new ones do not. I so remember chasing my own bg's around when we were mixing so I am not missing that action one bit. I am pleased to read where you said that the A1c can give us a sense of false security. This is a key fact in our lives and to be simple about it we must remember that testing is key to managing. I was thrilled when you got a pump, my friend! And I know you had success with the CGM also.
I started pumping in 1990 and have no complications. I do think some of that is also genetics. And maybe even just some positive energy and attitude. I will admit (only to you...) that I still like Lorna Doones, Richard :)
I am encouraged for the young T1's but I still hope for a cure some day. For us, we will just have to carry on with the ideas that our diabetes is manageable, we will not be denied health and happy, and I am always glad to see you. Thanks for sharing some encouragement!!
Hi Karen, it is good to see you here! I don't recall you being a trouble maker at that other place, but if you insist......lol.
The old beef/pork insulins contained C-peptide, but the insulins we use now do NOT! If you research C-peptide you will find that it offers protection to our eyes, kidneys and nervous system. If our insulins still contained C-peptide (CP), I think we would be less likely to have diabetes related complications. CP was not an additive in the beef/pork insulins, it was originally produced in the animals, just like it is in humans who are not T1D. CP could be added to the insulins we use today, but it has not been done. Why? That is another story...
There is a company that is making an injectible form of CP, and it has been used on humans in their trials, with good success. I think the company's name is Cebix if you want to look it up. I think they are waiting for approval to market the product, and you know how long that can take.
So you are right, we will have to carry on with our management, and hope for the best. There have been more than 3000 fifty year medals awarded to long term T1D's and, I think, more than 60 seventy-five year medals. I am anxious to get my 75 year medal in the year 2020. There is a lady here named Shoshana. She already has the 75 year medal. Look her up and befriend her, you willlike her.
People like you and Shosh give me hope that I'll live a decent life without scary complications (like I think I could handle Neuropathy...it can go bad if you injure yourself but with care it's better than kidney or eye disease...) . I mean I do have family history stacked against me as far as cardiovascular disease goes (and I'm not trying to be a pessimist , I'm trying to do everything I can to lower my risk of that too) but other than that , stories of people with type 1 who live pretty good long lives without major complications are needed more often. We always hear about people with kidney disease and amputations and not enough people who live long with it without major complications. Not too fun when you're a young adult type 1 who's pretty new to the whole thing.
I wouldn’t attemp to classify which complications are better than others. Neuropathy can completely screw your life up. Read about all the different neuropathies and you will understand.
