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.
"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."