There is a major research project going on in Boston called the Joslin Medalist Study. Every participant has been type 1 diabetic for 50 years, or more. I have been type 1 for 65 years, and participated in the Study in 2009. They hope to find the factors that have enabled us long term diabetics to live so long without any serious complications. If found, that could lead to a treatment that could be used by young type 1 diabetics, so they could have long, healthy lives too. The Study is ongoing and is funded by JDRF and NIH.
The Joslin Medalist Program
http://www.joslin.org/diabetes-research/medalist_program.html
The Joslin Medalists:
http://www.ndriresource.org/Donor_Programs/Individual_Donors/Joslin_Medalists/161/
Background of the Medalist Study:
http://www.joslin.org/medalist/6268.html]
What have they learned?
Acidrock, Go tp the third link and you will find a summary of the early findings. Kinda interesting.
Thanks Nell! It looks interesting however it seems like the conclusion is that the 50 year medalists have genetic anomalies that allow them to continue producing insulin? It also sounds like they are troopers who keep things in line however the study doesn’t seem to suggest a concise tactical approach that they are transmitting to the rest of us? That always frustrates me about these sort of studies. It’s great to know that it’s possible but I want to start nagging Blue Cross to buy me some! Thanks again for your help finding it though. I looked at the first two and bailed out. I can hear it now “50 year medalists are patient and read all the links…” eeek!
Hey Rock! When I was there in Dec, 2009, the Study coordinator told me some participants freely admitted that they had not taken care of themselves, and ate almost whatever they wanted, but had no serious complications. Others had taken very good care of themselves, but did have some complications. Those two groups were small in comparison to the largest group consisting of people who tried hard and had nothing seriously wrong with them. I am in that largest group, I have always tried very hard and used tight control. I did have some retinopathy and neuropathy during the early years of the new century, but then had more stable control after starting pumping in 2007. All the symptoms of the retinopathy and neuropathy disappeared. That makes me feel complication-free. I have mild nerve damage, but it does not bother me much at all. I am also 71, so the nerve damage may be due to aging.
LOL, there’s a lot of people younger than you who have nerve damage due to aging Richard! I am in a different group in that I eat (and drink…heh heh heh…) pretty much whatever I want however I am also pretty aggressive in pursuing decent BG results. Part of me is sort of moving on now and I’m also broadening my ‘net’ to watch BP and cholesterol too, trying other stuff (almond butter [blech] vs. peanut butter) and things like that. I don’t have “official” complications but I do notice slow wound healing.
I have had a few things, like coffee table shins, the time I fell off of the treadmill into the elliptical, I did a really nice hop onto one of the elliptical footpads but whaled my shin on the other one when the pedals rotated, and seemingly minor scratches/ scrapes/ wounds like that that take a really long time to heal? I also had a toenail that turned black fell off the first time I’d run 33 miles in a week a bit more than a year ago. I was running outside in the winter and experimenting w/ multiple sock combos (which I’ve stopped doing…) and one toenail got fried by something. The skin around it started to get puffy and red so I punted and went to the doc who assured me that it was absolutely the correct thing to do, the podiatrist cut the nail off and antibiotics got rid of the infection so I can still count to 20 if I have my shoes off. It also seems like the hair on my legs is thinning but I’m not 100% sure if that’s D related (docs have mentioned that as a complication) or might have something to do w/ compression socks, spandex pants, etc. for running?
Perhaps if I cut back on the wild binges and the notaswildasIused tobebutstillgetmygrooveon partying it would perhaps help but I’m still running a lot and feel pretty good most of the time. Last year, I took zero sick days. Although I will admit that when I feel a cold coming on, I tend to run my BG down to the 40s and have a couple of cocktails to create an unhealthy environment for the germs. I have no idea if it works but it’s fun!
I like that people w/ 50 years of D are recognized. I can’t help but think that in the old days, like before BG machines, it would truly have been a hair raising experience. I would like to see the medical industry take a more aggressive approach though and am not sure that I am reading that in the Joslin study report? I’d like to see “here’s what these people did and you should do it too!” or something but I guess there’s no magic bullet?
Well, since I was lucky enough to be diagnosed as an adult (age 44 for formal diagnosis), I’m not planning on making it 50 years! 40 years, maybe! 
But I HAVE gone 20 years without any complications, other than a small hemorrhage in my left eye, which should resolve by itself. The optometrist said he did not see any evidence of retinopathy. So the goal is to keep it that way.
What I was interested in was that they did NOT see any correlation with A1c. I’m really curious what they do find. If it’s genetic, that’s hard to design a treatment for, but if there are other factors, I sincerely hope they can help the kids and young adults who have to live with it for a long time!
Rock, we fill out many pages before showing up at Joslin for our study and being tested. We tell much about our backgrounds, how we ate, exercised, family,etc. that is just the tip of the iceberg. I can’t remember it all now. Environmental and psychological factors, and many other things are being considered.
Natalie, I have read so many times that many of us have been told that if we have T1D for 20 years, and have no complications, then we are unlikely to have them in the future. That assumes we continue to take the very best care of ourselves. I know there are exceptions to that, but by and large, I think it is probably true.
I hope I remember all this stuff by the time I hit 50 years. At one point I sort of scoffed at the notion I 'd make it that far however now it’s not totally ridiculous?
Natalie, when I did HBO, I stayed in a senior’s place. There were several women in their 90s that moved around pretty good. You never know!
I sure hope you’re right, Richard! The best news was that my coronary arteries are clear, even with a family history of non-diabetic early heart disease. And with the influence of the good people on this group (you don’t know how glad I am to have found it), I am resolved to continue to take care of myself as best as I can, which is better than I ever did before. You guys are the greatest!
I received my medal today, it came very quickly after I sent in my documentation, & is much more impressive than I was expecting. I shall certainly sign up to participate in the study.
I think I am relatively side effect free. The only major one is retinopathy in my left eye, which started in the late 1980s so about 25 years after diagnosis. I had a lot of laser treatments & it has been pretty stable for the last 10 years, no sign of it in my right eye, I’ve also had cataract ops in both eyes. I have arthritis in my fingers but my hands look exactly like my mother’s so I think that is hereditary. No others with T1 in my family that I know of.
We have a lady in our folk-dance group who is 92, and when we were in a line, and she was behind me, she PUSHED me because I wasn’t moving fast enough! There’s a Yiddish word, “Alavai!” that sort of means 'I wish!" maybe I’ll make it into my 90’s!
See, you have seen those women in the 90s in action! We are going to get there & we will be the ones pushing!
It is the PWD version of the baby boomers! We can be the dia-boomers.
Danny, many years ago there was a 25 year nedal, but it has been discontinued. There are very many T1D’going beyond 25, and an ever increasing number going beyond 50. They may eventually discontinue the 50 year medal too. When a big group reaches the 75 year level,…hmmm!..I wonder? There may be some who reach the 100 year level someday! That would really be something!!!
Annabella, I am pleased to hear you like the medal, and that you will participate in the Medalist Study. It is nice that they will pay for your transportation and on night of lodging.
They better not discontinue the 50 year medal until 2035! You only have 10 years to go to get the 75 year. You can be the first one to get the 100 year one! Time for a new book!
Natalie, you are doing so well that I will not be surprised if you make it to your 90s. Keep on keeping on!!!