Yesterday I heard of
another child who died because of Type 1 diabetes. She was thirteen years
old–the age of my own son. She had Type 1 diabetes–like my son. She had
parents who loved her and who were diligent in her diabetes care but she died
anyway. That is every parent’s greatest fear. She had hopes and dreams. She
wanted to die an old woman with a book on her chest…sadly she died before she
became old or had any experience as a woman. It is truly heartbreaking.
This is not the first death from
diabetes that we have heard of in just this past year. This is not the first
time that I have heard of someone so young being taken by this disease. This
death led me down a path of contemplation. Why were so many people dying? Was
this something new? Did we lose children to this disease before? Had we traded
rapid insulin and better technology for a higher chance of death?
Tragic, heartbreaking. Curious about your question if rapid acting insulin & better technology are causing more deaths. In the days of NPH, there were horrifying lows. Current insulin is far more predictable & manageable. CGMS help a lot of people by alerting them to lows. My guess is that less people die young from diabetes than in the past, but I don’t know what timeframe you’re suggesting. Did this girl die from a hypo?
This is truly tragic. Unfortunately, sudden deaths due to Type 1 diabetes have always happened. The statistic that I first read when I was diagnosed was that 6% of Type 1s die of what is termed “dead in bed” or a nighttime low that kills. Bruce Buckingham, endo at Stanford, used this statistic at a 2010 talk I attended. But I agree with Gerri, the new insulins make it easier to avoid lows, especially nighttime. NPH was horrible.
I remember NPH and ended up splitting the daily dose in 6 and injecting every 4 hours or as close to as possible without going insane. Lantus 2 shots a day and many less lows.
It is soooo sad but I think now we have soooo much more than we did when I took diabetes at 10 in 73. Yes there are some bad things that are happening but PLEASE remember b/f the discovery of insulin in the 1920’s there were soooooooo many more lost to diabetes.
This girl did die of a hypo (as far as I have been told).
I have heard people who have had diabetes for a number of years complain about the rapid action of the newer insulins.
I agree that personally, the unpredictable nature of NPH was a nightmare. Life is much easier with the rapid acting and long lasting insulins of today. That being said, my question again comes from the fact that so many strive to achieve “normal” A1c’s. We know that the tighter the control we strive to achieve, the higher the risk of lows and developing hypoglycemic unawareness.
CGMS are fabulous but realistically, I wonder how many can afford to use them? They are also not always accurate and I have heard that the alarms are often ignored by users especially if they are low at the time.
Thank you everyone for your comments! And believe me, I am very, very grateful for insulin. I have seen what no insulin does to a body and I would never want to see it again.
Agree that CGMS & their supplies are outrageously expensive & not that consistently accurate.
People young and old have died from Diabetes whether it’s from a hypo of hyper. I can only imagine how parents feel when their children die before they do. When I was dxed over 50 years ago as a T1 I wasn’t expected to live more then 20-25 years…that was the expected longetivity for T1’s at that time. Present time it still happens although sometime it’s not known why.
I had an online friend that that did multiple shots of regular insulin who died during the night. I ended up in the ER many many times when I was first diagnosed and we had no meters, CGMS, or insulin pumps. I had OJ forced down me with paramedics in my bedroom many a time. I don’t think it is the new technology as I have not passed out in over 25 years. I think it is the nature of the beast. INSULIN IS NOT A CURE.
This is extremely sad, but unfortunately, it has happened before. See HERE for the obituary of a 4 year old who died from a low about 13 years ago. I agree with Karen: INSULIN IS NOT A CURE.
These parents did everything right. These kids are between a rock and a hard place. Teen years are a time when insulin is radically increased/decreased almost on a daily basis sometimes and the increase/decrease is temporary due to the strong influence of growth hormones at this time. In our case “temporary” means the insulin needs drop back to baseline that very same evening… at what time of night this happens changes. Even without tight control, I believe there are still many episodes of hypoglycemia at night. I am not sure if the extra risk of cardiac problems is due to frequent hypoglycemic events or just due to having Type 1 in general. This is unspeakably sad and hits very close to home. These parents are experiencing our greatest fear. I will pray for this family. We must all work harder for a cure.
@ Betty J We got about the same number of years there. I was 10 when I took diabetes and the DR looked straight at this 10 year old child and said “You won’t live to see 30” Yep how things have changed. I’m so sorry for this family
@Doris D. The NIH sent an email that chronicles how far Type 1 treatment has come since the 1940s and 1950s. I signup for emails regarding D and that is one I received a while ago.
@ Betty J please tell me what website to go to.
@Doris D - it’s the National Institute of Health. It’s one of those government sites…I think it’s NIH.gov if not just do a search for it.
Forgot to say they have a special section for Diabetes.
I really shouldn’t read these posts. Every time I do, it ups my anxiety level to the Nth degree. I live with the suppressed terror of losing Eric to an extreme low on a daily basis. I know there are far more people who live through childhood with this disease than otherwise, but just as with everything, it’s the small number of kids who don’t make it that always seem to “make the news” and those, naturally, are the ones that haunt me.
I do think some of it could be the newer insulins, but I also think that we are just more aware of what is happening because of the internet. Twenty years ago, we did not have the internet and have friends all over the world that we talk to. We did not hear these stories back then and they are not just stories but something that happened to friends that we talk to on a regular basis.
I also think that with tighter control, the risk of hypoglycemia goes up. Complications go down with tighter control and less people are dying from complications. In one sense, we are shifting the way people die. I am hypo-unaware and I also have neuropathy. I have been criticized for trying to maintain tight control because of being hypo-unaware but I feel like I am being asked to choose being dying from a low blood sugar or a slow miserable death from neuropathy. That is not a choice anyone should have to make. I am not willing to give up tight control and let met neuropathy get worse.
It was pretty deadly in the early 20’s and for the 50,000 years before that.
After reading botg Wlizebath’s and Kelly’s post. Elizebath I can feel your pain. My oldest daughter (now 22) took Type 1 at 11 (not as young as your son but I think the hury is still there and ooooh how I blamed myself for her getting it. Last year she looked at me and told me “Mama it wasn’t your fault I took diabetes” Words of joy to my ears!!!) The heart ache of losing your child can NEVER be easy
And Kelly I really think your a STROG woman with that decision!