We’ve all heard the stories: a child or adult starts experiencing symptoms that seem to be nothing more than a cold or the flu. There’s no sign of anything more serious afoot, at first, so no one catches on to what’s really happening. The doctor doesn’t catch the cycle of high blood sugars, and that spirals into hospitalization, often with dangerous diabetic ketoacidosis (DKA).
For many, that leads to shock and panic, because it seems like a diabetes diagnosis came out of nowhere. And sadly, some don’t make it.
All because there may not have been enough awareness of this illness ahead of time, either in the public eye or even among the practicing general medical community.
Two new new diabetes awareness campaigns created this Spring are hoping to change that.
While they’re two separate programs, these grassroots efforts go hand-in-hand and aim to raise the level of public knowledge about type 1 before a full-fledged onset. Behind both of them are well-known advocate and D-Dad Tom Karlya in New York, who has two kids of his own with type 1 — and helping him with one of the campaigns is D-Mom Kim May in Amarillo, Texas, who has a son diagnosed about five years ago. The initiatives hope to not only raise the bar on recognition of T1 symptoms among the general public, but also to push for family doctors to screen for type 1 with a simple glucose test if and when any classic “flu-like” D-symptoms are seen in patients.
There’s actually a lot of talk right now about what can be done to catch diabetes early on, to prevent the nastier sides of high blood sugars and even fatalities that come with undiagnosed diabetes. One news story recently proclaimed that undiagnosed diabetes is slipping through the cracks far less than it used to, with only 11% of diabetes cases in the U.S. remaining undiagnosed, suggesting major improvements in screening and diagnosis during the last two decades. And there was the recent FDA approval of Abbott’s new “Architect” A1C test, which provides faster in-clinic results to help doctors spot an oncoming diagnosis quickly.
Now this pair of new patient-led awareness campaigns is pushing our own community to help get the word out locally, wherever we live.
Both campaigns have been in the works for at least a year, Tom says, but they really started taking shape in 2013 after the frenzy about diabetes misconceptions and how the media so often “gets it wrong” when covering diabetes — including that Hansel and Gretel movie that took, ahem… creative liberties when weaving diabetes into the storyline. So, Tom decided to do something about it.
Child’s Cry for Change
Late last year, Tom started contacting people in the medical community at various organizations to get an idea of how he could make a difference. He wrote about this quest on his blog, Diabetes Dad.
The goal: amass a large number of these missed diagnosis stories and present them to leadership in medicine, health agencies and government in the hopes that change occurs — the very least being the administration of a urine test or glucose test.
“I am tired of this happening and I will not sit still any longer. I said it a million times — just ‘don’t do nothing.’ Will it work? I am not sure but doing nothing is unacceptable to me and we should certainly try,” he says.
Tom started collecting stories and has now compiled more than 40 of them, included in a booklet that he sent to all kinds of powers-that-be: the President of the United States, First Lady, Congressional leaders, Americana Academy of Pediatrics, American Academy of Family Physicians, National Association of School Nurses, and a number of news outlets like the New York Times, Wall Street Journal, and USA Today as well as those specifically in the diabetes community. The booklet was sent out at the end of March, coinciding with Diabetes Alert Day on March 25.
We got a copy, simply titled with the name of the campaign: A Child’s Cry for Change. Inside, there are dozens of stories from families all across the country — mostly D-parents, but also those who were initially misdiagnosed as adults. And yes, going through the stories, it’s alarming to hear how similar so many of them are in recounting how their family doctors or trained medical professionals just didn’t recognize the signs or bother to conduct a simple glucose test to help figure out what might be happening.
In his call for action, Tom asks for a number of items to be considered: protocols that could be put in place in physicians’ offices about symptoms, awareness posters or initiatives within communities and medical or school organizations, and even events that might help boost parent or doctor awareness about diagnosing diabetes.
He officially announced the campaign early this month, updating the D-Community on where everything stands.
To date, Tom says he’s received mostly positive feedback, and points to the biggest success so far: hearing directly from Dr. Reid Blackwelder, who serves as president of the American Academy of Family Physicians, and seemed responsive to the idea of instituting some type of change. Awesome!
“The President of the American Academy of Family Physicians, in my mind, is as big of a ‘decision-maker’ as it gets in this effort,” Tom told us. “If the AAFP undertakes an educational outreach to their physicians, this could be an enormous help in getting doctors to look harder at flu-like symptoms possibly being type 1 diabetes. I am not out for a lot of whirlwind activity, I am out for change. If groups like the AAFP take action, we are on the way. One life being saved makes this entire project worth it!”
Getting Diabetes Right
The second grassroots effort is aimed at more general public awareness-building, and this is where Tom has teamed up with Texas D-Mom Kim May, whose young son was diagnosed five years ago. Kim went through a scare at diagnosis with her son in critical condition, and with that experience in mind, she used her professional skills in marketing to co-create this new initiative with Tom.
Announced in early April, the campaign’s called Get Diabetes Right and focuses on making people more aware of the differences in diabetes types and how the general public can recognize the signs of type 1 specifically, in order to help prevent DKA-at-diagnosis and those times when symptoms are completely missed. On the initiative’s Facebook page you can find a slew of posters and flyers including Teacher Tips, which can be printed and passed out locally, in your nearby schools, libraries or doctor’s offices, or even sent to local media.
The genesis of this campaign was how Tom and Kim (along with most of us in the D-Community) have been seeing media misconceptions for as long as we can remember. In the organizers’ words:
“We’ve been watching the media portray diabetes incorrectly; lumping type 1 and type 2 together and slapping two diseases with one label…
We’ve tolerated the misinformed references about losing weight, eating too much sugar, and needing to exercise with no mention about what actually causes type 1 diabetes, and we’ve watched as the number of children and adults diagnosed with type 1 at death continues to escalate. We’re tired of seeing type 1 diabetes diagnosed this way when a simple blood test, or even a urine test, may have saved a life.”
As it’s been almost a month since Get Diabetes Right kicked off, and Tom says the response here has been hugely positive too. The Facebook page has more than 1,800 likes, which at least shows traction in the online world.
The parents most active in this initiative plan to create a “push pin” map so that people can share where they’re putting up these flyers out in the real world in their own communities, Tom says.
He’s also pondering a diabetes-themed spinoff of the Best and Worst Dressed Lists and Razzie Awards for worst films, two concepts that are huge attention-grabbers in the media and could do the same for D-Awareness if done right. Tom says he’d love to create the Get Diabetes Right Awards, maybe named “The Pokers” or something catchy that our community could bestow on those TV, movie, newspaper and magazine media sources that get it right and wrong.
“All of this is to get people to start to understand. Start to listen. Continue to educate,” Tom says. “If just one family states that they saw a poster in a library, or at the school nurse’s office, and it made them investigate the flu-like symptoms and T1 diabetes was diagnosed without the pain, the heartache, and/or even death… if just one life is spared, these efforts will have all been worth it.”