** Disclaimer: This post may upset some of you, but I’m not going to apologize for it. If it’s not worth upsetting some readers, it’s probably not worth blogging about
Piper has type 1 diabetes.
One in twenty people like Piper
will die from low blood sugar.
Now, initially people will think that 1 in 20 children will die from hypoglycemia (low blood sugars or hypos). It takes a little critical thinking and a lot of reading of what others think to realize that adults with type 1 are also included in that number and the time-span is a lifetime, not just a year.
But still, 1 in 20? 5%? Over the weekend, many discussions have taken place about the accuracy of those numbers. And as I was thinking about them this weekend, I was reminded me of a conversation I had with my pump rep a year or so ago. His estimate was that only about 10% of patients are actively managing their diabetes and making dosage adjustments, either with MDI or pumping. He came to this figure, and there is NO scientific backing at all to it, after speaking with both patients and doctors.
Now, think of the people we know and have regular contact with? How many of them are NOT in that 10% and do actively manage their condition? When we apply that number to the relatively few other type 1 diabetic’s we know, does that make it so much more shocking? Will 5% of the people in that I personally know die from a hypo event? I pray not and I certainly would be devastated if it happened to a single one. It’s tough enough putting up the blue candle when it is someone you don’t personally know.
Most of the people we interact with in our little DOC world are the ones doing it, as parents and patients they realize the importance of it and more importantly, realize that diabetes is a dangerous disease.
I personally believe that is the message of the ad. “Hey world! Diabetes is dangerous and can be deadly!” When you look at that number it is a slap in the face! Especially when technology is available that could help prevent these types of deaths, which is what most people don’t have a clue about.
Technology that the FDA just can’t quite seem able to wrap it’s sleepy. bureaucratic head around despite the fact that the EU seems to be quite happy with the current offering of a LGS (Low Glucose Suspend) option that would turn insulin delivery off from the pump when needed.
So let’s take that 10% “estimate” from a pump rep and adjust it so it’s just a “majority” of pumpers only make pump changes after seeing their doc/cde, this number becomes much more reasonable. If the same numbers can be applied to the MDI patients, that number becomes even more realistic in my mind. I know hypo’s were a huge threat to me when I was on MDI.
I’ve been doing this for a long time, and that 1:20 number scares me as well. My dex awoke me to a 24 one nite, due to human error, and living alone I was damn lucky to wake up at that point. Somehow, I was still cognizant enough to even take a photo of it.
But I’ve also had that dex go all ??? on me as well, I regained consciousness and was paralyzed for lord knows how long before I was able to at least get the cartridge out of my pump.
Having read alot about it over the weekend, I think that 1:20 is indeed conservative. We all know diabetes is a dangerous disease, if it takes something like this to spread some of that awareness then I am all for it. Hell, I’ll be happy if even one person was to ask me “type 1?”
Where is all this going? Dunno, let you know when I get there. The discussions and blogs that I’ve read about it have ranged from “OMG! Hell yes! Tell it like it is!” to “Why is the JDRF using sensationalism for something our kids might see”? and “Why are we wasting time and resources on something that is not a cure?”
Those are all valid perspectives. As a child, I learned pretty quickly that I could die if I didn’t do what I was supposed to. Though, back then… I digress
The Artificial Pancreas Project? I’ve written before that I am very much a proponent of this. With the cure and/or the ability to transform in to a mouse not even on the horizon, we need better tools. Let me put that 1 in 20 number another way. We need better tools so we can survive long enough to have a life, a family, and our dreams let alone a cure.
Sensationalism. Now this one gets me a bit. Besides the particular statement of “1 in 20”, how does this ad differ from any other JDRF marketing collateral that has a child on it? Put an adult on that ad and all you’ll get is a “Well, he’s an adult he should know what he’s doing by now.” But put a child there, you get an emotional response and those responses drive people to do things; be it donating, volunteering, voting for some political candidate or buying mac and cheese. It’s all marketing and I’ll agree this does walk a thin line, but I’ve witnessed worse.
I attended a JDRF walk kick-off luncheon once here in Kansas City and one of the honorary co-chairs was the keynote speaker. This speaker’s son had been diagnosed as a teen about 5 years previous, if memory serves. At the luncheon, she had met some children, some as young as 3 or 4.
When she started to speak it just seemed to sink in that these kids were going to have diabetes, and everything that goes with it for the rest of their lives. She lost it. Totally broke down in tears at the podium about how terrible it was for her teen but how much worse it was to be so little and have to endure so much from such a horrendous disease.
And that was a horrendous, inappropriate message to send to those kids, teens and young adults in attendance, not to mention their siblings, parents and loved ones. That for the rest of their lives they would be afflicted with this horrible disease called diabetes. Was it over-the-top sensationalistic? Absolutely, but t he worst part? It was totally unexpected, at least I hope it was, the poor woman just lost it when she should have been prepared.
I almost got up and walked out.
While the younger children were coloring and not having a care in the world, there were older children there who were picking up on every word she said. Maybe your kids don’t totally “get it” yet, but I bet a bunch “got it” that day. Oh, and by they way? Your kids probably understand more than you give them credit for…
Is that number shocking? Yes, yes it is and it’s about damn time.