Gloomy email from JDRF

[joelcam]

Hi,

When I was diagnosed last year I signed up to every diabetes website imaginable but only really use this one. I still get a lot of emails from the other sites that I read when they arrive though.

I had one this morning from JDRF asking me to help raise awareness by downloading a letter and sending to my local newspaper etc. The letter mentioned what T1 is all about but went on to mention that people with T1 have a reduced life expectancy of 20 years on average.

Hardly the cheeriest thing to read and my understanding is that there is no reduction in life expectancy particularly if you have great control.

This will probably open up a big debate with differing views and I know each case is different but can someone cheer me back up again please!

JC

 

[jopar]

Keep in mind stastics are always based on past data and doesn't include newer technology or future technology!!! So is only a forecast and if anything like the whethter forcast could very well be wrong!!!

I've been diaebtic for 21 years, if I compare the then and now, the then was basically pre-historic to how I treat my diabetes now.. Just imagine with the level of increased understanding, knowledge and technology I've seen in this last 21years continues just imagine what it going to be around in 2030!!!

 

[joelcam]

Good point!

 

[Celtic.Piskie]

Yes, we could live as lo ng as the rest of the population, but basically it does reduce our life expectancy on average.
We do not heal as well, infections are more difficult to manage, the flu can kill us. It;s not cheery, but it is the truth. Diabetes is lifelong, and does recduce our life expectancy.

How could it not? High / low blood sugar swings, infection raising and making it unpredictable, severe lows, the way it complicates absolutely everything else.

I don't know about 20 years, but it does impact your general health in a negative way, it's just the truth, not gloomy, not depressing, it is just the way it is. You could live a slong as anyone else, there's nothing stopping that. But on average, we don't live as long.

 

[Alanem]

I saw a documentary on the discovery of insulin a long time ago and if I remember correctly the first guinea pig was a girl in her teens on her last legs and she went on till she was 76. The industry has come on a tad since then but the ball is still at your feet.

 

[Debloubed]

There is a book called something like 'secrets of longest living people with diabetes' you can get it on Amazon or similar, pretty amazing to read all the stories! Some put it down to exercise some put it down to diet and some put it down to a combination of the 2, but they hung in there til they were in their 80's or 90's! which is a fine old age in my opinion :wink: 25 years in for me, keep 'em coming!

 

[crushersmum]

http://www.diabetes-stories.com/index.asp is the most fantastic website of Oral histories of diabetes - & includes the story of hte 74 year old in the TV documentory.
It is a great way to look at the progress through the century & how so many people have survived far longer than the 20 years they talked of in the past.
Have a look as most of the stories are encoraging.

 

[leggott]

HI, I agree with the above posts. I think that where fund raising is concerned they always try and scare people into giving money. I have read about the reduced life expectancy for diabetics, but typically the figure has been much lower between 5 & 15 years. So if your life expectancy is around 90, then having diabetes may let you live to a ripe old age of 85 whichs sounds pretty good to me.

We are just in the process of getting pumps for my kids, the new omnipod looks fantastic - no tubing and wireless communication! I bet it won't be long before it will have a closed loop system so the device can alert you to high and low blood sugars!

Obviously having good control is important, along with a healthy lifestyle and weight. My husband, who has been type 1 for 25 years now says that having diabetes has made him much more focused on being healthy. Had he of not had type 1 D he reckons he would have lead a much unhealthier lifestyle and not lived very long anyway!

 

[sugar2]

I think Jopar was spot on!

Look after yourself,and hopefully technology will keep improving. I am still dreaming about the CGM that interacts with a pump, and maintains my perfect BG. Even in the past few years, it has got closer..maybe not here for everyone, but maybe soon!

I am 33 years in, and when I started, we had to pee on a tablet, and hope it stayed blue....if it went orange, then you had sugar :cry: ...then we had sticks to wee on, and then blood tests, and now pumps etc. Insulin technology is improving...i know we debate whether some things are an improvemnt or not, but it does give me hope.

 

[annabanana81]

Hey
Don't let this one email get you down. It was written specifically to scare you and others into donating money. So many things affect life expectancy now and give you this that or the other disease... If we listened to all of them, we would never eat, drink, sleep on the wrong side, sit down for too long, stand up for too long.... Honestly Im surprised we haven't been told how to blow our nose because a certain way may kill us!!!!!!
Live life to the full, don't let diabetes get in the way, find other ways to do things. I was diagnosed type 1 2 years ago at 27 yrs old, everyone else was so dam worried I decided I didn't need to worry too! I eat properly (with a knife and fork!!) I exercise when I can, but I don't beat myself up about it when I can't. I know that I don't get better very easily now, I got swine flu 7 months after being diagnosed, then pleurisy! Sure things happen, and you can't stop most of it, so don't worry too much, and enjoy the good days. When you have a bad day, and someone is looking after you. Don't be upset you need looking after, be glad that someone loves you enough to be there for you.
And remember, on forums like this, there is always someone there to cheer you up
Take care, Anna x

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[RoseRodent]

Remember that this statistic is not only manipulated for fund-raising purposes but includes everyone with different ranges of control. It includes the teenager who denies she has diabetes, never tests, doesn't take her insulin and hasn't been to the clinic since diagnosis. It includes the youth admitted to hospital with sugars so high he's still critical and he decides to go home.(This is not anti-teen prejudice, these just happen to be both people I have met) It includes the diabetic abusing "recreational" drugs. It includes the diabetic alcoholic. It includes the insulin abusers who have found out how to use their diabetes to lose weight.

All of those people are not you, but they feed into the wider statistic of being T1 diabetic and then dying. Many of these people will have been on further diabetes interventions as early as their twenties, of course they have a reduced life expectancy if they are on dialysis by 35. The statistic either has not been broken down into good and poor control historically (longitudinal research of that nature ismind-bogglingly expensive) or they have decided not to break it down like that because it spoils their scary figure.

 

[douglaselliot]

How irresponsible it is of Diabetes UK to publish on this website its report (Diabetes in the UK 2010: Key Statistics on Diabetes) which states that the average life expectancy of a type 1 diabetic is reduced by 'more than 20 years' So how long exactly is this, 25 years 30 years? Such vague (and therefore pointless) claims serve no purpose and merely add to the confusion (no wonder 'life expectancy and confusion' has appeared in a previous discussion forum on this website. What is 'average' anyway. Well done Diabetes UK for adding to this confusion

Interestingly on this same website Diabetes UK refers to a new study from the Office of Population Research at Princeton University, which states that on average life expectancy of a diabetic is reduced by 8.5 years compared to a non diabetic. So which one is it, 8.5 or 20+?

We (T1 diabetics) are well aware of the impact our condition has on our bodies and how life expectancy must be altered particularly if control is poor, but publishing such scaremongering claims of 'over 20 years' is wrong and very unhelpful.

In the above report, 'Diabetes in the UK 2010: Key Statistics on Diabetes' reference is also made to depression amongst diabetics and how the prevalence of depression amongst diabetics is twice as high as amongst the general population. I wonder if Diabetes UK has ever considered that the claims
regards significant reductions in life expectancy and depression are in any way linked. I am sure they may depress many readers.

Poor show Diabetes UK. I will unsubscribe from your mailing list immediately.

Douglas Elliot

 

[LittleSue]

I have T1, so my life expectancy is reduced. Due to poor control for the first 20+ years, I "should" have loads of complications by now, but I haven't. Whereas my "healthy" brother, with full life expectancy, died after an accident and I've outlived him by 3 yrs already. So much for statistics!

Just take care of yourself, you'll be keeping yourself in the best shape to benefit from future new treatments, as well as proving the gloom and doom brigade wrong.

 

[bonerp]

I was diagnosed in '77 and a 'cure' has been round the corner ever since....

Might take another 2 years, 200 years or never, so don't hold your breath eh!

 

[scoyyt57]

T1 47 years am now 54 and planning to live for another 30 years (at least)!

I was diagnosed in 1964. No blood testing at home or anything like that. If you could go back in time and see what the treatment was like when I was first diagnosed you wouldn't believe it.

 

[sicko666]

Lol so true i have had it since a baby (since 1975) and there were no blood test devices and injections were from a glass syringe cleaned and kept in alcohol with harpoons on the end!!!!!!!!!!!! Then the 80's disposable plastic syringes arrived and blood testers.In the last 10years we finally got jet injectors, insulin pumps, direct line iports to the liver.AND research into inhailers ,Cgm's with pumps, even pills...Statistics are built up from decades of figures, and when people die its mostly about luck anyway, catched flu,got hit by a bus,the healthiest of people can drop dead without having anything wrong at all, figures are just that, figures, lol you might be the one who lives to 150 to balance those who get hit by buses!

 

[mousemat]

My opinion is, that there is not much point in living to a greatage until science can preserve the brain to a good degreee .

Since the only time I had a level of over 13 was the morning before I had a hospital operation
( normal 5.2) and that I am on slow release Metformin, taken the night before.. So there should have been no consequent spike, is that stress plays a great part in ill health.

We should therefore only worry about having a good low carb diet, taking some fun exercise and try to relax.

 

[Becca]

I must say that I find a lot of the emails really unhelpful, and actually downright depressing at times. I know that we should be vigilant about this condition, because it is serious and needs a lot of attention in order to maintain health. But these emails, which basically come with gloomy headlines and frankly misleading statistics, can really be counterproductive. I got one during a horrible day last year and frankly had a good weep at work - this is not what diabetes support groups are supposed to do!

Like you say, it's stress that is often the uncontrollable factor in diabetes. I'm beginning to find the super-positive American style Type One mentality far more attractive than the limited life-span promoters that seem to dominate in Europe. Type one is such a varied group of people, with only diabetes in common, that making these claims is practically meaningless unless you qualify them or make them more specific.

 

[Glados]

Oh dear, how horrible. None of us, not even the "healthy" people, know how long we have to live. That's in the hands of God, fate, whatever else you want to call it. Control the things that you can and try not to worry about the rest.

 

[adheco]

I was diagnosed Type 1 in March 1950, over 65 years ago, and soon after my parents and I joined the British Diabetic Association then chaired by H G Wells, and never looked back. We were educated about what we could have expected at that time by the association's experts and were supported by the compassion and understanding of the nurses and doctors at the Royal Free Hospital, and of course by members of my family. The result has been close control and no complications so far. I have no illusions about my life expectancy, fully appreciating just how insidious diabetes can be, but knowing the facts about my disease does not have to be depressing especially when one realises that just a few decades ago there was absolutely no hope. It is important to realise that a long, happy and enjoyable life is available to those with diabetes, even more so now that such great technical developments have made life so much easier over recent decades. In my opinion acquiring as much knowledge as possible is the key to good control and a long and happy life.