This Diabetes Awareness Month Tell the World You Aren’t Equal

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 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. 

 

 

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Comments (24)

  1. MoD4acure at

    I was given this information from our local chapter when asked about the source of the statistic for what it is worth. 
    Here is where it was sourced from… JDRF estimates of the number of people with T1D who die from hypoglycemia (low blood sugar) range from 2% – 10%.  Therefore, 1 in 20, or 5% is a conservative estimate roughly in the middle of this range. 
     Specifically, several publications by Philip E. Cryer, MD on hypoglycemia[1],[2],[3] cite estimates of death due to hypoglycemia in patients with type 1 diabetes.  Older estimates were that 2% to 4%[4],[5],[6] of patients with type 1 diabetes die from hypoglycemia and more recent estimates are that 6%[7], 7%[8], or 10%[9] of those with type 1 diabetes die from hypoglycemia.

    I am not trying to put a brave face on diabetes but trying to educate what type 1 is, what insulin does, what typical blood sugar levels are for normal and diabetics and so on.  I will participate in some of the other blue Fridays and postcard exchanges as well.  I believe the purpose of the ad was to help show the FDA exactly how much we need them to pass guidance on the artificial pancreas.  It is merely to enlighten people on much the low suspend pump and APP are needed.  I do think it is bold and like what they are trying to do.  As a PoCWD I don’t like reading the statistic and it certainly won’t help me sleep any better but it is what it is.  Thank you for sharing your thoughts on all of this and I like your idea of taking a photo of 20 people on Nov 14 to really show the statistic from a personal side.

  2. LisaH at

    Does the 1 in 20 statistic include people that would die in accidents because of a hypo?  I know of T1 diabetics who have drowned or died in a car crash because of going low.

  3. I absolutely adore the technology coming out of Israel and the doctors at Hadassah are always one step ahead of the game! I also have multiple other medical problems including a rare form of lung disease related to a cystic fibrosis like disease and the research of new treatments and drugs for that is also amazing as well. I’ve several friends that left the states after college to make aliyah (move to Israel) and go to med school in Israel and are now happily living and working in communities there. 

    Regarding your post, I think that many of the wear blue, postcard, and World Diabetes Day things are to bring attention and unity to Diabetes. Yes, we need the low glucose suspend and APP, but we also need people to recognize that we as a community need these things, and what we go through on a daily basis. 

  4. Robin Bousquet at

    Thank you for posting this, hard to swallow with my 2 year old diagnosed this year but i posted it to educate others…You are very right. This is a life threatening challenge everyday, sometimes more than once a day.

  5. Jessica Apple
    Jess at

    @Lisa: I don’t know.
    @Aliza: I agree that community is important.  I don’t know what I’d do without the DOC.  I hope your health is good!
    @Robin: As a pwd married to a pwd, I was totally shocked at the statistic.  I can’t even imagine how horrific it is for a parent of a cwd.  Let’s keep pushing for better treatments and care for your little one and every one else.  I believe we can do it.  I really and truly think that we have the power to push for change that  will make that statistic a thing of the sad past.

  6. Stoyan at

    That is indeed a very startling statistic. I was not aware of it either.
    It is frightening – and yes, we definitely have to speak up and change things. We need something that we can call a cure – I am not sure if the artificial pancreas is the end all of achievements, but we need something that is going to get rid of complications such as low blood sugar, among others. We need to unhook ourselves from the Diabetes Industry money making machine.

  7. Michelle S. at

    Wow Jessica, thanks for bringing this to my attention.  it is shocking, but i think of a few close calls I have, and I know how dangerous hypoglycemia is.  Unfortunately, so many people think insulin was our cure.  Insulin saves lives, but we can do SO much better. 

  8. As a type 2, the statistic is even for me rather appalling!  I could understand 1 in 200, but 1 in 20 is unreal and now I understand a little better the reason that type 1’s are calling for a cure.  The artificial pancreas is far from a cure, but could reduce the death toll.  Living Cell Technologies is also trying to get their product on the market and this could be a great help for the hypoglycemically unaware.
    I agree with you about all the hoopla and lights being a waste when the money could be better directed for a cure.

  9. Kayla at

    I am the mother of a child with Type 1 diabetes. This statistic scares the living crap out of me. This is the reason I wake up at night to check my son’s blood sugar. I live in fear every single time he goes to sleep…afraid that he may never wake up again. He is 8 years old. NO ONE should have to live with this disease. It robs children of their childhood, it takes children away from their families much too soon, it takes the lives of loved ones. I cannot and don’t want to imagine the pain of losing a child. That is why I will continue to fight for awareness and educate those around us. I am strong for my son…but he is the bravest person I have ever met.

  10. shuttner at

    Just wondering if they have ever tried stem cell treatment or if there would be any benefit in trying that procedure. I am a type II.

  11. momoftype1adult at

    Sorry can’t get on the bandwagon of living a life telling my child and the world that “he can’t.” I will teach optimism and tell my son “yes he can” no matter the obstacle he faces, type 1 diabetes or something else.

  12. Jessica Apple
    Jess at

    @Bob and @shuttner: It’s great to have support of T2’s.  Thank you!  Regarding stem cells, our science editor Karmel Allison wrote a terrific piece on stem cells and diabetes: http://asweetlife.org/a-sweet-life-staff/featured/diabetes-and-stem-cell-research-a-report-from-the-world-stem-cell-summit/20568/.
    @momoftype1adult:  Total respect for your opinion.  Thanks for taking the time to consider mine.  I share it out of my own hopes and optimism that we can bring about better diabetes care for your son and the rest of us! 

  13. You’ve put your finger on the flaw with ALL the “awareness” campaigns for serious disesases. They are acts of pure slacktivism. People feel good for wearing bracelets, lighting candles, buying products, marching with signs, etc, but this accomplishes nothing (except in some cases to raise sales of the products with ribbons supplied by cynical corporations whose actual contributions to the cause turn out to be tiny) None of these awareness campaigns result in real nformation being given to the public about the condition.  People with the condition are only spotlighted if they are courageous, upbeat, and, of course, alive. 
    Real diabetes awareness would involve educating people with diabetes about the best ways to treat their condition. Based on the email I get thanks to my site, I know for a fact that the treatment many receive for diabetes of ALL types is of abysmal quality. People are suffering terrible complications because they a) can’t afford to see a competent endocrinologist, b) can’t afford the drugs or food they need, and c) Trust in doctors who received their medical training 30 years ago who are treating them in ways that might have made sense in 1985 but don’t now. 
    So yes, you are absolutely right. People with diabetes of all types don’t need to feel good. We need to get good information about our condition(s), more effective treatments, and the high quality medical care few can afford.

     
     

  14. momoftype1adult at

    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.

  15. 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.

  16. donna schindler at

    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 in development for many years (by Todd Zion – they even did successful trials on animals) and was ready for clinical human trials when Merck bought the rights to it in Dec. ’10 for millions. I can find no evidence  clinical trials on humans have started and all you get when you write them is form letters that say nothing.
     

  17. Hallie at

    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!
     

  18. Jessica Apple
    Jess at

    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.” 
     

  19. 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 me to live a bit more of a “normal” life.

  20. Steve at

    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 in 20 will mean something to her, but that day is not today. That’s my job, her mother’s job and the job of every adult person out there willing and able to make a difference. For our children we wear blue, we walk, we make art and clever videos. For everyone else: read the numbers.   

  21. kathy at

    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 to increased funding and donations needed to reach the cure.  I am in favor of a more aggressive approach.

  22. Gary at

    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.

  23. Valerie Hall at

    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.

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