Gloomy email from JDRF

[Diamattic]

I think 20 years is far to high of a number meant to evoke sympathy from readers.. I am pretty sure that the most recent data says 7 on average for men, and 5 for women.


This is the AVERAGE of T1Ds, which means half live longer, half shorter. This does not differentiate the age of diagnosis and years with the disease. So sadly, i would expect that someone diagnosed at 3 years old wouldn't like as long as someone diagnosed at 30 years old.

Also, treatment has rapidly advanced these days, so in order to estimate life expectancy they need people to actually die, which means the only real data points is people dying within the last decade, which means they likely had very poor treatment for most of their lives, and as such died early.

These days someone can pretty much go directly on the pump (like myself, i was diagnosed last year - maintained an A1C of 5.5ish% all year and am now on a pump with a CGM) this has not been the case for MOST people.

I would think if you are on this forum, and CARE and manage well we are probably all in the above average half, so i would maybe expect 3-5 years off my life... But to put that in perspective smoking is 5-7 years off, NOT going to the gym is a couple years off, eating junk is a couple years off.. So its just like any normal vice a couple years off.

And to be honest If i am 'supposed' to die at 88 and die at 84 - how will i know i lost 4 years? lol

 

[Anaelena]

It all depends on the diabetic . People don't usually die from diabetes but from its complications. Not sure how they factor all that in to the statistics. How many of us long standing diabetics who were diagnosed as kids had parents who were told we would be lucky to see 30? I was told I couldn't /shouldn't have children too. I don't mind these "predictions" if it helps the cause . So far I proved my past Drs predictions wrong

 

[donnellysdogs]

I was told I'd be lucky if I lived 25 years with it and would get a medal. Diagnosed at 20. Those thoughts always stayed with me. Never, ever thought I would get to 52. Proved my doc wrong too!
Uncle now 82 and type 1.5 diagnosed 35 years and has outlived majority of his siblings due to asbestosis in others....
He has been looked after religously by my Aunty.. Food has always been fresh, and home made. Nothing processed and portions similar to war rations.
Recently met a chap 62 years with T1!!! He said that he weighed everything and believed his good health down to that and because of carrying on the rationing and no excess all his life.

 

[endocrinegremlin]

Frankly I'm glad that now it is only 20 years. When my aunt was diagnosed they thought she would never see adulthood. We have organ failure. We are on life support. Especially type ones. Let's not pretend that we are not. We are doing **** fine, in my opinion, to be living as long as we are so let's keep fighting to live even longer. Plus, in newsletters to spread like that, stats like that are VITAL. It hits the 'at least it isn't cancer' people in the face. We are not sick enough to get the attention we need to let's put forward what is really wrong as hard as we can until we get some real help.

 

[endocrinegremlin]

I was told I'd be lucky if I lived 25 years with it and would get a medal. Diagnosed at 20. Those thoughts always stayed with me. Never, ever thought I would get to 52. Proved my doc wrong too!
Uncle now 82 and type 1.5 diagnosed 35 years and has outlived majority of his siblings due to asbestosis in others....
He has been looked after religously by my Aunty.. Food has always been fresh, and home made. Nothing processed and portions similar to war rations.
Recently met a chap 62 years with T1!!! He said that he weighed everything and believed his good health down to that and because of carrying on the rationing and no excess all his life.

Agreed. My aunt has been D 54 years and it was implied she'd never have a family, never reach adulthood. She's still here! We never know where life will go, or tech.

 

[donnellysdogs]

I couldn't have children. They were right on that.... But still here and still plodding on.