People with diabetes living longer
A US study has found that adults who have had type 1 diabetes since childhood are living longer lives, but their mortality rate is still significantly higher than the general population.
The study, conducted in Pennsylvania, observed more than 1000 patients who were born between 1965 and 1979 and diagnosed with type 1 diabetes before the age of 18.
The results suggested that the more recent the diagnosis, the better the life expectancy. The average mortality rate for the patients in this study was seven times higher than the general population.
Dr Trevor Orchard, the study’s senior author, said “The encouraging thing is that, given good control, you can have a near-normal life expectancy.”
Dr Orchard is professor of epidemiology, medicine and paediatrics at the University of Pittsburgh.
JDRF’s Director of Complications Therapies, Dr Barbara Araneo, said the overall message of the study was positive.
“Diabetes care has improved in many ways over the last couple of decades, and as a result people with diabetes are living longer now.”
“Managing and taking good care of your diabetes is the surest way to reduce the risk of developing complications later in life,” said Dr Araneo.
Diabetes Care November 29, 2010 vol. 33 no. 12 2573-2579
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Hmmm! If I read this correctly it isn't necessarily good news for us that have had Type 1 for a long time but better news if you've been diagnosed recently?
Perhaps something on 'how they have found ways of preventing/reversing some of the complications arising from long term Type1 diabetes might be cheering for us older T1s?
S
M
The last I read (in JDRF info), people with Type 1 were living 15 years less than "avarage."
Does anyine know what the number is now?
Hi Martyn, I agree ! I have had Type 1 since I was 8yrs old, almost 46yrs now. The long-term complications
are horrific, and many complications are not even dealt with in the Diabetes Members Magazines.
I live in Australia and hear of many in the USA have been cured for years using transplanted beta cells
into the liver. Most of my complications are Neurological – Advanced Diabetic Polyneuropathy; brachial
plexopathy in both shoulders; my arms just hang from my shoulders due to no muscle tone as my spine
is collapsing from the neck down, some vertebrae pressing on the spinal cord. With the muscles being
too weak to support my skeletal frame, I can't hold myself up for too long as my back caves-in.
I have had carpal tunnel syndrome since the age of 28yrs. and two surguries on each wrist.
I have swollen joints in my fingers; lack of awareness of holding things in my left hand or under my left
arm. Those are a few of my complications. The medication they use for neuropathy is pathetic and
does not work – epilepsy medication is the norm, and the side-effects are so severe you are better off
dead. The resistance to insulin after being on it for so long is also a problem. Some days your bloods
are good, then the next day they are in the middle 20's.
More research needs to be done in helping those who are incapacitated due to neurological symptoms.
Pain relief is only standard medication. My life has been hell for many, many years, waking up one
morning and finding I couldn't use my legs – it took me 18mths to be able to walk again unaided.
Definitely more research into the less commonly known complications. Please. Mary.
Good on you Mary! – The reality is that the complications are horrendous and the researchers need to help those of us LIVING with the disease, Note the tone/slant of the article's headline, "(T1D's are) living longer lives, (BUT) their mortality rate is still significantly higher than the general population"…I mean to say, anyone recently diagnosed usually has an insulin pump, or has had better insulin than we did, or hasn't had the disease long enough to tell if there's going to be complications. See part 2 next entry…
(cont'd from above)…..Also we may be living longer BUT is it a quality of life with these dreaded complications? NO, it isn't! I myself have had T1D for almost as long as you – got it when I was 12 in 1976 and am now 47. I've had my kidneys fail, a kidney/pancreas transplant 3 years ago, suffer nausea every morning now, take 16 tablets in total a day for the anti-rejection, had my eyesight destroyed 15 years ago, have no feeling in my feet and hands, also have carpel tunnel in various fingers, have gastro-paresis (ie stomach nerve-ending damage) and all these add up to a lesser quality of life for me! …. We should complain more! it's the squeaky wheel that gets fixed ! Most people I know say to me" Oh, you look so healthy" (If ONLY they knew the reality of this INVISIBLE disease!!!!
Thanks Mary,
Gina Pash
ginapash@gmail.com
hi guys l m shocked at what is being said, i also have t1b and epilepsy, graves disease just to name a few um at the moment i am being trated for a frozen shoulder and a weakness in my other hand- you guys are making me feel very frightened – i would like to know more about what you are talking about? maybe it is about time these complications were given an airing thanks megan
My 7 year old daughter was diagnosed in September last year and I find all the things I have read above very difficult to deal with. I am still learning a lot about the disease and its complications and find myself feeling quite frightened by the vast array of things that can go wrong. I am sooo sorry to hear all the things that you are going through and have my fingers crossed that one day, someone will be able to assist not only in a cure but in helping to improve the quality of life for those who have suffered for soooo long. Take care and Merry Christmas.
Cara my beautiful little 2 year old girl was diagnosed in July this year and I too find this all very hard to hear. I hope and wish everyday that a cure is just around the corner and definately improved care for those living with all of the complications that go with type 1 diabetes.
Im shocked to hear of so many of them (complications). I am really hoping she can get a pump early in the new year as we are struggling with highs and lows every day as it is very hard to manage a two year olds eating habits!
I hope you all have a great christmas and new year, and pray the cure will be found soon!
Well. My 8 year old was diagnosed in July this year as well and has been having a hard time of it of late crying because of her needles and the thought of it being "forever". We have just applied for the pump in the new year. To be honest I really had no idea that the complications were as dreadful as described above and my heart goes out to those like you suffering with this disease. I think the view that many take of T1D is that its "just" diabetes, its not that serious like cancer or something. What I ahve read above scares me to death for my child and I pray that there is some major headway being made for the treatment of those who have complications and those that are recently diagnosed. Please have a wonderful Christmas and hold your loved ones a little tighter this year. My thoughts and prayers are with those that are so ill with this disease.
Tears run down my face as I read this. My beautiful 4 year old son was diagnosed just 7 weeks ago, and I believe he is amazing. He has been doing his own fingerpricks for 6 weeks and his own insulin injections for the last 2 weeks (with a syringe). My heart absolutely breaks thinking about what he has been through, is going through and is now looking to go through in years to come. We hear of the most "common" complications, however, I had no idea there were so many. All you ever want to do is protect your children, and when you can't, it is a parents worst nightmare. I really can't bear the thought of him suffering any more than he already does. I hold on to the hope that medical advancements will alleviate some of these complications, and my heart goes out to those that already suffer them. I know they say that 'what doesn't kill us makes us stronger', but it's not fair that some end up like hercules.
To all above, I wish you a very merry christmas, and a new year of new developments to assist with all the yucky things associated with T1D.
To all the concerned parents of children living with T1D i wish to say hello and offer you a little support! My name is Lynda im almost 25 and was diagnosed with T1D when i was 11 months old in 1987. To offer you all some encouragment i am a normal healthy active woman and reasonably well managed. the only complication si have developed is ceoliacs (allergy to wheat) and beleive me its not the be all and all! the alternatives to food out there are amazing! I have recently had my check up and althought my HbA1c was a little higher than normal my dr assured me i am 100% healthy. perfect kidney and liver and eye function. I must say i have had a very supportive family my entire life and if i can make it to 24 yrs living with T1D and this is how healthy i am then i say bring on the next 24yrs. I beleive we have fantastic medical advancements on offer and i was one of the lucky ones to be in the top 10 ppl in WA to get a pump back when they 1st arrived. I did take myself off it for 2 yrs but am back on it and am happy and well adjusted.
My Message to you this christmas is to accept your children (or yourself) for what you have! living with diabetes can be a challange but there is support out there! I would love to chat with any of you if you would like to just chat to someone!
And yes i am the BIGGEST chocoholic alive and eat just like a "normal" person, i exercise when i think about it and most of all i look after myself. please be encouraged that living with diabetes is not all doom and gloom. i also have a sister living with diabetes and she is also just like me. have a wonderful xmas with your families.
Hello. My 6 year old boy was diagnosed in September this year and like your daughter is having a hard time with the enormity of it all…..especially at this time of year when there's Xmas parties and lots of food he's not supposed to eat. Even his advent calendar has to have sugar free lollies in it….yummy……not! My mother has T1D and when we went to hospital I asked the doctor if it meant that getting it earlier meant you get the complications earlier. He said these days we're not seeing the complications that we used to because there is much better control. I don't know about that especially after reading all this. I think the pump is definitely the way to go though. We can't get it yet as my son is still in the "honeymoon phase". I wish you all the best and to everyone living with T1D. Let's fight for a cure! Merry Christmas.
Hi Cara, don't stress too much. I have had diabetes since I was 11 years old and I'm now in my 30s. I have no such complications, I would be asking the above writters how much exercise they did as teenagers, how well they ate as teenagers. Besides, the aforementioned respondants are correct, control is much better these days. I do not use the pump and hopefully never will need to but the fact that this option is there for those who do not have the control to monitor themselves via needles is a bonus. I am am a very active high school teacher who kickboxes, swims, bellydances and has never been unable to do anything because of my diabetes. (oooh except you can't scuba dive!) Hope this helps… it's really not nearly as dramatic as others seem to think…
Hi Sarah, don't stress too much. I have had diabetes since I was 11 years old and I'm now in my 30s. I have no such complications, I would be asking the above writters how much exercise they did as teenagers, how well they ate as teenagers. Besides, the aforementioned respondants are correct, control is much better these days. I do not use the pump and hopefully never will need to but the fact that this option is there for those who do not have the control to monitor themselves via needles is a bonus. I am am a very active high school teacher who kickboxes, swims, bellydances and has never been unable to do anything because of my diabetes. (oooh except you can't scuba dive!) Hope this helps… it's really not nearly as dramatic as others seem to think…
Hi Alice, don't stress too much. I have had diabetes since I was 11 years old and I'm now in my 30s. I have no such complications, I would be asking the above writters how much exercise they did as teenagers, how well they ate as teenagers. Besides, the aforementioned respondants are correct, control is much better these days. I do not use the pump and hopefully never will need to but the fact that this option is there for those who do not have the control to monitor themselves via needles is a bonus. I am am a very active high school teacher who kickboxes, swims, bellydances and has never been unable to do anything because of my diabetes. (oooh except you can't scuba dive!) Hope this helps… it's really not nearly as dramatic as others seem to think…
I have responded to many of you who are concerned but I too wanted to add that I, like Lynda, am also a perfectly healthy and happy T1D. My HBA1C has almost always been in the 7s and I am an incredibly active 30 something year old.
I was diagnosed when I was 11 and I had the good fortune to come from 'hard as nails' farming parents. While encouraging me to be as active as possible and eat very healthily, they also made it impossible for me to feel sorry for myself or consumed by the possible complications. The key is to remain healthy and active and I would be questioning people with an arms length list of complications how active they were as adolescents and how healthy their diet was.
I am not, and hopefully will need to be on the pump as I beleive the key to managing any condition it to keep a perspective above how HEALTHY your and/or your children are not on all the things that can go wrong.
I am a teacher, a bellydancer, a kickboxer and I enjoy an active but not excessively active lifestyle. I loooooove chocolate and licorice and, to be perfectly honest, would have NO restraint with either of these foods were it not for diabetes… so there is a small up side
My son was diagnosed withT1D when he was just 6 years old. It made me horrified in the beginning and I had absolutely no idea how to manage this. Now with the grace of All Mighty Allah, he is 16+ and doing well, active in sports, plays football and Cricket which helps control his diabetes in a better way. His HbA1C also remains near the normal range. The only problem which he is facing these days is lots of fluctuations in his levels. He is using a combination of Humilin-N (NPH) and Humolog (Lispro) in the morning and evening and only Lispro after his Lunch.
is there any body who can guide me about the perfect insulin or its combination to be used for my my lovely son.
It is rewarding to see so many comments that are aiming to help others manage life with type 1 diabetes. Congratulations to the contributors on your generosity of spirit.
In response to comments about cure vs. prevention, JDRF would like to provide some information about our research strategy.
JDRF is focused on improving the lives of people with diabetes today and in the future, so our research support is directed towards the science that leads to better treatment as well as science leading to a cure.
Globally in 2009/10, JDRF dedicated over US$100 million to type 1 diabetes research. Around 60% of that was directed towards what are known as 'Cure' Therapies, while the remaining 40% was directed towards 'Treatment' therapies, which look at improving blood glucose control as well as treating and preventing complications.
These figures demonstrate that a very significant portion of JDRF's energy is directed towards improving the health and wellbeing of people with type 1 diabetes today while also working towards the ultimate goal, a cure.
To read more, please visit: http://www.jdrf.org.au/type-1-diabetes-research or review our 2009/10 Annual Report at http://www.jdrf.org.au/about-jdrf-australia/annua...
Just a comment. I was a little appalled by 'Kate's' words where she was casting aspesions against the writers above who were suffering from complications. I feel I should point out that the longer you have something wrong the more chance there is that it can go wrong despite your care. While some people might have minimal/minor trouble others – through no fault of their own – can have much more. The lesson is we do have to look after ourselves as that does reduce the risk AND/or the severity. This is not meant to frighten parents – believe me kids survive type 1 diabetes very well and grow up. I did and so have many of the respondents here. It is more a defense of those of us who have got complications (mine are relatively minor compared to those mentioned above) and now seem to be blamed for it by another diabetic (of all people) – that's almost as bad as people suggesting you got diabetes because you ate too many lollies as a kid!
Martyn
We have had better control of our sport loving teenager with the insulin pump – allows us to adjust her insulin on the fly and give her more spontaneity.e.g. a sudden change of timetable at school moves her phys ed class time well she just has a small snack then takes off her pump for the class and then puts it on a lower basal rate for the next couple of hours. It all works on fast acting insulin so you have a lot of control (of course things can go pear shaped very rapidly as well if it blocks up or something), but we are finding it a great solution. It requires a bit of extra thought and a dedication to testing your bgls but it does give you a sense of control. Counting carbs so closely also means she reconsiders her food choices sometimes which is GREAT as teenagers often will just put anything in their mouth!
well said Martyn.
Type 1 diabetes is a lifelong disease that develops when the pancreasClick here to see an illustration,stops making insulin.
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My son was diagnosed 3 weeks before he turned 6. My husband, my 2 daughters and myself were very upset and concerned about our beautiful boy, Jack. He has gone through so much but has managed to stay on top and remain strong. We as a family encourage him to stay positive, look after himself and enjoy life. Jack spends time with his family and friends, plays football, goes to the gym and enjoys life. To date there have been no complications and I pray that he lives a long and healthy, happy life. His levels have fluctuated over the years but they have always been controlled with the help of diabetic educators and his wonderful specialist that he has followed from The Royal Children's Hospital across to St Vincent's Hospital. Lets fight for a cure. Michelle
I know that I am late to this party but I would like to give my two cents on this. I am also a Type I and was diagnosed at the age of 17 months in 1979. The doctors at that time told my parents to take me home and call a funeral home because I would not live to be 2! I am now 33 years old. I wish I could say that I was a good diabetic and that I have no complications but the truth is I'm not as healthy as I should be. I have recently graduated from college with a bachelor's degree in social work.
I want to first address those on here who are parents of newly diagnosed children. My heart goes out to you! As difficult as it is to be the one diagnosed I believe the family and loved ones go through their own type of hell watching their child deal with this disease and not being able to change anything. I would encourage you to have hope though. Everyday new advancements and treatments and better quality of monitoring as well as medications are changing everything that was once known about T1s. I also want to stress that all forms of diabetes while called the same disease are as individual as the person themselves. Think of it like a finger print, no two are identical. Many of these stories are heart-breaking to read but please understand that these stories may never involve you or your child's future with this disease. Try to focus on the good things in your life right now. Your child may have an off day but that is not an automatic death sentence or even the beginning of the end it's just a bump in the road. Teach your child that everyone is different and just because they have this disease it does not mean that they are somehow less of an equal to their peers. Love your children for who they are and not the disease they have.
For those of you who have great control and are healthy…I truly congratulate you! I think you are a great example of what can happen to these newly diagnosed young ones. I would like to remind you though that not every diabetic has the stable home life you were raised in or the ability (whether physical, emotional or financial) to be able to control their diabetes. Do not judge so harshly.