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.
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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.
Don't be quiet about this disease...
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...