A few days ago, I heard about the JDRF ad in the New York Times and the Washington Post, but I didn’t see it until my friend Laura Houston posted it on her blog. The ad shows a beautiful little girl with type 1 diabetes, along with a statistic that made my jaw drop. One in twenty people with type 1 diabetes will die of low blood sugar. One in twenty will die from hypoglycemia?! Seriously? 1 in 20?
My first thought was that they must have left out the word “thousand.” It has to be one in twenty thousand. It can’t be one in twenty. I read about diabetes all day, every day. And somehow I have never seen that statistic anywhere, not presented like that, at least. 1 in 20.
Of course, I’ve always known the stakes are high. That’s the reason when I wake up in the middle of the night, I sometimes touch my husband’s forehead to see if there is sweat on his brow. If there is, I wake him to check his blood sugar. That’s the reason I cried when I first injected insulin into my thigh before I went to sleep. It wasn’t the pain. It was the thought of the two of us sleeping on insulin. The stakes are high, but 1 in 20…?
There’s a good chance 100 people with type 1 diabetes will read this post today. 5 in 100.
I bet I have at least 200 acquaintances with type 1 diabetes. 10 in 200.
I want to ask you something. Am I the only person who thinks we’re doing Diabetes Awareness Month all wrong? Parties, cheering, patting each other on the back, dressing up as blue as Smurfs, lighting up monuments…? That’s all nice, but it doesn’t bring about real change. So, we can’t all take out an ad the New York Times, but if you get together with people on November 14, World Diabetes Day, you can take a sign with your photo on it that says “SAVE MY LIFE.” If twenty of you get together, take a photo and write a horrifying caption with what the statistic says will to happen to someone in the picture. You can let your local newspapers know what you’re going to do. As Laura Houston says, “Be bold.”
Our most important goal in diabetes month must be to change the statistic 1 in 20. We should all be screaming at the top of our lungs for the artificial pancreas. SCREAMING! And when it’s here, we should all start screaming to make sure it’s available to everyone who needs it.
If you want to educate people about diabetes this month, don’t do it by trying to prove that we are equal in all ways, and that we can eat that. We aren’t equal. Trying to prove that we are the same, and putting on our brave faces may in fact be our fatal flaw. Wheelchair users don’t get cities to put in curb ramps by pretending they can walk. We have a life-threatening illness. Every time we eat, we inject insulin. That means every time we eat, we’re risking our lives. And the more carbohydrates we eat, the more insulin we take, the riskier it gets. 1 in 20. Stop saying, yes, I can. Start screaming, No, I can’t. Maybe then the world, and the FDA, will pay attention. Let us all begin to eat in peace.
Click here to sign JDRF’s Artificial Pancreas Petition.
AMEN Gary!!! Dr. Denise Faustman is our Messiah! She has the cure. We need to
SCREAM it from the mountaintops….www.faustmanlab.org. My 5-1/2 year old son was diagnosed 5 weeks ago today and he is already in their database awaiting to see if he is chosen for Phase II. I will NOT let my son become a statistic…..not on my watch. My hope is that Faustman will prove beyond a shadow of a doubt that BCG is the answer and in 4-6 years the cure is available.
Do yourselves a favor and send whatever you can to Dr Faustman. The JDRF is a waste of time as is the AP. Been doing this nearly 4 decades and it’s completely ruined my life. Dr Faustman is my only hope. I was on the SmartInsulin bandwagon for a long time but since Merck got its hands on it, its vanished into thin air.
Its difficult to say how horrible diabetes can be in the presence of parents of diabetics. But I think its time for the general public to become more aware of the realities that we face daily. Its more than just the needles that we are best know for. Seeing a picture of a child with a statistic like that creates an impact. The one positive thing that comes with diabetes is strength, but this can have the repercussion of masking our plights. Shocking pictures with statistics might be the best way to get the message across. This hopefully will lead… Read more »
As a parent, it’s very difficult as everything we do and believe is leading our children by example. The first thing I do every morning is check Lia to see that she’s breathing. It is a fear that is with me constantly. I don’t let her see that worry though because the last thing I want is for her to be concerned that when she goes to sleep she has a 1 in 20 chance of not waking up. Those statistics are not for kids and I hope JDRF does right by not throwing them around carelessly. One day 1… Read more »
I LOVE THIS AD. It’s something that needs to be put out there. So few people really understand what it’s like to live with T1D and I’m tired of constantly having to explain that this isn’t Aunt Mildred’s diabetes (you know, the proverbial aunt we all have to hear about when someone finds out we’re “diabetic”). T1D is a disease that, whether we look like it or not, puts us on the edge of life and death every moment of the day and night. I am ready for a cure, or at least something that resembles one and can allow… Read more »
Thanks to everyone for the thoughtful replies. @Hallie, and the other parents who’ve commented, I know the perspective of a parent is different, and I completely understand those of you who don’t like the JDRF ad. I think you’re so right, Hallie, that there must be a way to be normal and still convey the seriousness of the disease.
It may be possible that a few years of making bolder pleas will bring about technology that actually will make us more “normal.”
I’m screaming. It’s time for boldness.
It’s such a fine line… we want our kids to be seen as “normal” and yet we want people to GET this disease is serious. There MUST be a way for people see both – as those who live with this disease do. It’s our responsibility to help get it out there.
Great post – love it!
These statistics are way off. Most of the data they are using is from the 70’s- way before we even had decent meters and insulins were less efficient. I have no interest in the artificial pancreas as we are fine with MDI. But even if we were to use it, I would want it tested by the FDA and safe to use, as there is way to much at stake here to use faulty technology. I would be more interested in the JDRF pushing SmartInsulin (glucose responsive Insulin) It would mean only one shot every few days. It has been… Read more »
Great post, Jess. I totally agree with you. Yes, the positivity and faith and support is incredible and so important in so many ways. But it is a two-sided coin and something we must be mindful of. As much as we can encourage and utilize that positivity, it also can hurt us as a community and on the individual front when we’re dealing with general public and non-awareness. Thanks for sharing this.
I absolutely respect your opinion, and I actually have complete faith and optimism that there will be cure for our kids. We differ in the way to go about it, and I respect your opinion as well. Remember that our kids will need faith each and every day managing this disease 24/7 on their own. The psychological factors play just as big a role in patient care here as do the physical – especially when you’re the cwd not the pwd.