Long Term Success With Type 1 Diabetes

By Richard157 Latest Reply 2014-06-21 15:52:20 -0500
Started 2014-06-17 10:47:43 -0500

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!!

14 replies

Dr Gary
Dr GaryCA 2014-06-21 15:52:20 -0500 Report

Richard, it's always nice to see you. And thanks for sharing this with us! You are an inspiration. Gary

hantuni 2014-06-19 12:49:34 -0500 Report

Richard I want to thank you for this post! … I'm 25 ad have had type 1 for 18years i had sort of resigned my self to the fact that having diabetes meant complications in later life was sort of a given … Having read your post I feel much more hopeful and keen to keep good control.

I've been put on a pump in the last year as I had very poor controle during sport and at night time often fitting during my sleep and being brought round by my partner, I now try hard to keep my levels good but struggle as I'm sure we all do at certain times,

Thank you again so much for giving me a reason and aim to keep it going in the right direction

Also what are the medals about? I'm from the uk and have no idea what they are about?

Thanks Hannah x

Richard157 2014-06-19 14:49:16 -0500 Report

Hi Hannah, there are medals awarded for 50 and 75 years of type 1 diabetes. The Joslin Diabetes Center in Boston awards them when applicants can show proof of the year they were diagnosed. These medals are given to people all over the world. It is an international thing.

Type1Lou 2014-06-18 18:01:46 -0500 Report

Thank you for sharing this Richard! I only started pumping in 2011 although I was Dx in 1976. Pumping has given me greater control and I'm sorry I didn't start sooner. Your experience gives me added incentive to avoid the spikes and lows. I have a bit of neuropathy but nothing painful and my ophthalmologist says I have the beginnings of retinopathy but nothing has changed in the last 5 years there. My last A1c was 6.8 but my goal is to get it back into the low 6's. Again, thank you for the encouraging news!

wasted.wonder 2014-06-18 17:48:44 -0500 Report

Great going Richard. : )

But I have one query. You started pumping insulin from 2007 then how did you manage the other 54 years. I am told that T1's can't survive without insulin.

packrat2 2014-06-18 10:25:24 -0500 Report

HI Richard, my 50 year medal is on is way, its been 50 years as of June 2014
sent papers in about tree weeks ago. Yes I have had a bypass and stents also
and other complications but doing well on the pump. regards Mark

Richard157 2014-06-18 18:59:28 -0500 Report

Congrats on the medal. Are you on Facebook? There is a Joslin Medalist group there. It is a "secret" group so you would have to send a message to Stephanie Hastings to join the group. Find her page and send her a message, if you are interested. Being is a group where every member is a 50 year medalist is very special.

IronOre 2014-06-17 19:34:05 -0500 Report

Based on information that I have been getting, and my opinion of being T1 for 39 years; I strongly feel that many of the complications that diabetics have is due to keeping their BS level too low,
Now how low is too low ? I am really not sure, but I know that I am doing just fine living how I am.

Richard157 2014-06-18 19:02:55 -0500 Report

Some people are hypounaware and they have bad lows without feeling them until it is too late. Using a CGM can help a lot since it allows you to see your BS throughout the day and night, without having to test with your meter so much.

MoeGig 2014-06-17 11:28:17 -0500 Report

Hello Richard, nice to hear from you again. Looking forward to being a 50 medalist (next year). Your commentary is quite enlightening. I did experience cardiac disease with stents and ultimately a triple bypass after cardiac arrest. (Emt's brought me back to life after 7 paddle shots…lucky). But I've had no other complications. I've resisted the pump, but do check often and have always managed an A1c in the 6's. I do have occasional high's and low's, but manage to control quite well. I have no neuropath or retinopathy. The one thing I do do is run regularly to exercise my heart and small arteries and a recent exam showed my 15 year old heart grafts to be completely clear. It looks like my experience might be quite similar to many in your group. I wish you continued success.

Richard157 2014-06-18 19:05:55 -0500 Report

Hello MoeGig, it is good to hear that you do not have the usual complications. Good luck with your heart! Read the reply I wrote for packrat2, you may be interested in the Joslin Medalist group on Facebook.

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