It doesn’t seem possible. In this day and age, with all the advanced medicines and devices, the diligent attention so many of us pay to our glucose control and that of our diabetic children… How can a healthy, happy child with diabetes, seemingly in such good control, simply pass away in her sleep without a peep or a warning sign that might have alerted her loved ones that something was wrong?
But it did happen, to a 13-year-old girl, earlier this week: dead-in-bed syndrome, they call it. (Read passionate responses from fellow D-bloggers
here and here and also here.) I have a 13-year-old girl, for God’s sake. And I was driving one of my other children on a school field trip when I heard about this tragedy. My stomach is in knots. Because what can we do? We pour our hearts out onto the internet, network with each other and do our best to educate and cheerlead — but in the light of sudden, unavoidable death it all seems so flat and useless. I can’t stop thinking about those parents…
I had planned to write a post today about some of the upcoming campaigns and contests for National Diabetes Awareness Month (November) and World Diabetes Day (Nov. 14). But now I feel foolish. What are the real possibilities for all this advocacy to avoid the worst of what this illness can do? Words, words, words… and still young people die senselessly…
But then I read over the words of Sherry, mother of a type 1 diabetic child in Canada (you can easily substitute “we PWDs” for “our children” here):
“When we hear of a family who is suffering the worst loss imaginable, we all know it could happen to any one of us. It is what bonds us — perfect strangers — in a very real and profound way. We understand one another and what we go through every day. The reality of what we all face.
What we need to do is find a way of sharing this reality. We need to figure out how to impress upon the public the urgent need for a cure. Because our children don’t look sick. They look just like every other child. Most days people wouldn’t even know that our children are usually feeling the exhausting effects of erratic blood sugars. People would never guess that they are constantly at risk of overdosing on insulin. People don’t think about the long term complications our children face because of type 1 diabetes such as heart disease, hypertension, peripheral vascular disease, vision loss, limb amputation, neuropathy and the list goes on.
And people aren’t aware of just what is entailed in managing type 1 diabetes and the constant monitoring required, from minute to minute, hour to hour, day and night, to keep our precious children safe.
Blog. Talk. Write. Answer questions. Encourage discussions. Be out there. Test in public. Don’t hide the minutia of diabetes management. Encourage your children to answer questions from their friends. Suggest speech topics that involve diabetes.
Raise money. Raise awareness.
Walk.
Don’t be quiet about this disease…
…be loud!”
My voice feels weak today. But I think Sherry is right. The best we can do — especially us wordsmith types — is to continue “sounding the alarm” as loudly as possible through various advocacy campaigns.
On that note, I bring to you some of the efforts being put together by passionate advocates as we approach National Diabetes Awareness Month and World Diabetes Day:
Of course, advocates the world over are working to light up various monuments in blue on Nov. 14. Here in San Francisco, the team at Close Concerns has set its sights on the Metreon building. Good stuff.
JDRF is running a Type 1 Talk video/party campaign. They’re encouraging people to host house parties, taking advantage of their live streaming video capabilities. Watch the video here to learn how to participate.
ADA is pushing hard on their high-profile Stop Diabetes campaign. Rockstar Bret Michaels is the face of this one! (They’ve also launched a new blog by the name of DiabetesStopsHere, btw.) Here’s the description of the national video contest they are running through the month of November:
This fall, inspire the nation to stand up and fight a disease that kills more people than breast cancer and AIDS combined.
Create a 30-second video stating why you want to Stop Diabetes once and for all. Then, enter the “Share Your Vision to Stop Diabetes” video contest between now and November 30 on stopdiabetes.com. Be sure to check out sample videos provided by VSP® Vision Care, the sponsor of the contest.
Once the video submissions are complete, the public will be able to vote for the most compelling video early next year on stopdiabetes.com. The top three finalists will receive an Apple iPad. The Grand Prize winner also will be a part of a Stop Diabetes public service announcement.
The small but empowered DiabetesSisters community is launching its own national campaign built around the color orange:
“orange:will … will help establish a greater awareness of the unique challenges faced by women with diabetes. It represents the sheer will and determination required for women to manage their diabetes successfully. It represents the idea that orange will empower us, orange will
engage us, and orange will unite us! Orange WILL do many important things for women with diabetes!”
“The goal of orange:will is for orange to bring attention to our disease and empower us much like pink has done for breast cancer and red has done for heart disease. Rest assured that we do not want to take attention away from other established diabetes movements (such as World Diabetes Day), but we do want to highlight women and their unique challenges with diabetes.”
To participate, you just need to go to www.orangewill.org and follow the instructions for uploading images.
And last but not a bit least, the Diabetes Hands Foundation is collaborating with the DRI (Diabetes Research Institute) to bring us two great campaigns for November:
The Big Blue Test will once again be a worldwide “glucose-test-in” on Nov. 14 in which PWDs will use the #bigbluetest hashtag on Twitter to share their BG testing experiences around the globe.
And a new video will be unveiled Nov. 1; Roche Diabetes has committed to donating $75,000 split between the International Diabetes Federation’s Life for a Child program and Insulin For Life, in proportion to the number of views the video gets between Nov. 1 and Nov. 14. The community needs to reach 100,000 views in order to get the $75,000, so please be a part of that!
I plan to bring you more on all of these efforts as we approach November. Words, words, words — I know. But working together, getting the word out, and creating that urgency is what it’s all about, right?
Consider the possibilities…






I didn’t know about some of these things. Thanks for putting them all in one place.
Hi’ on our Facebook page I am putting together a VERY large Video Picture-Collage with stories from parents. All entries will have a chance to win a personally signed copy of our book “Mommy, what is Type-1 Diabetes?” In which a portion from each book goes to JDRF to continue their efforts and advancements. Just thought I would share and thank you for this wonderful post.
Thanks for sharing Sherry’s words. As a PWD, and a mother-to-be, her words were touching, and desperation for a cure for her child palpable.
It is unfortunate that this is happened to that young child, but it is something that we have to deal with every day as diabetics. I’m approaching 30 years with this disease, and I still have a fear of “not waking up”. I make sure that my blood sugar is up before I go to bed. A1C be damned…I refuse to die in my sleep to keep my A1C below 7. Tight control is good, but you still gotta live life!
Thanks for this, Amy.
I live in St. louis and think the Gateway Arch would be a perfect monument to light up for diabetes awareness. (It recently was lighted in pink for breast cancer awareness). I would like to contact my local JDRF and ADA chapters to see if we can get this going. However, I am confused—blue or orange? Do they represent different things?
@kim – really good question. Christopher Thomas of DiabeticRockstar made this point over the summer. We have red for ADA and blue-ish for JDRF, awareness ribbons are often grey, WDD is bright blue — so which is it? I kinda think that adding orange into the mix just confuses things. But I do want to be supportive of all these awareness campaigns…
Please see this post on “Know Thy Illness Symbol” for more thoughts on the matter:
http://www.diabetesmine.com/2010/08/know-thy-illness-symbol-get-involved.html
I have been reading up on dead-in-bed syndrome and it seems the belief is that it is caused by arrhythmia caused by hypoglycemia, but they aren’t sure. My question is, why does this seem to only affect the youth? And if hypoglycemia causes you to have a possibly fatal arrhythmia, how come people don’t die from them while awake?
Type 1 is so under the radar as to what it is, and even that it exists, that it’s appalling. Not being a parent I truly can’t imagine the fear of having a child with it. With condolences, and for all parents of a type 1 child, we should remember that one life lost is too many and that dead in bed is rare, not common.
For us t1 adults, I agree Amy let’s flaunt it: test in public, inject in public, wear your pump so someone will ask a question. For so long we’ve been habituated to hide it. Don’t, let your bravery to wake up the world be the gift you give all of us.
Amy,
This story is unbelievably tragic and unimaginable. After reading before bedtime I checked my son’s blood sugar every 2 hours last night I could not sleep. I love Sherry’s words about advocacy and making people aware of the dangers of type 1. Otherwise healthy kids ( and grown ups) with type 1 are seemingly so “normal” to the outside world it is easy to forget they are living on the edge every day.
Amy, I am curious if you are allowed to post your opinion on this is there any one particular research organization group that you feel more strongly about in terms of being closer to finding an actual real “cure” ( not an artificial pancreas) There is so much research going in in many different areas.. I would be interested to hear your thoughts. What do you think of Denise Faustman’s research?
As the mother of a child with T1 hearing this news literally made me cry. Cry for a child I had never met, never knew existed until she was gone. But, she and my child share a common thread and I share that thread with her parents. Riley not waking up in the morning is one of my biggest fears (even though I check him throughout the night). The first thing I do every morning when I get up is tiptoe into his room and look for his little chest to rise and fall. It is then that I breathe a sigh of relief. I’ve been doing it for 5 years now. My heart aches for this family. We need a cure NOW!! (www.faustmanlab.org)
Diabetes is a killer,it is dabilitating.The more I find out about it the more it scares me.Yet I’ve really learned from my fellow carriers,to stay positive.A day at atime!