Raising awareness about dangerous DKA (Diabetic Ketoacidosis) seems to be all the rage these days.
We’ve seen several new campaigns recently focused on preventing a missed diagnosis or undiagnosed diabetes altogether, coupled with DKA (a state of super-high blood sugar that can lead to a diabetic coma).
Actually, the push on so-called “D-Spotting” began a few years ago with the incredible passion of D-Dad and advocate Tom Karlya. But now there are multiple efforts underway to address this important issue.
Here’s a look at three of those efforts happening now in the D-Community.
One collaborative effort out of Texas is called Before It’s Too Late, created by the local Tyler Type 1 Diabetes Foundation (in Tyler, Texas) and a San Diego business called Grace & Salt, which is run by a woman with T1D. This campaign interestingly uses a blood drop icon not too dissimilar from the logo of the powerhouse Beyond Type 1 group — which is also advocating on the same DKA Awareness/T1D Warning Signs issue, but separately.
The Tyler Type One Foundation is a pretty local group formed by parents in that area east of Dallas, TX. The group reaches out within 24 to 48 hours of someone’s diagnosis with resources and peer support and awareness materials. Pretty cool! And Grace & Salt is an Etsy-based business that sells jewelry, woodworking and other home decor to “cultivate community” — including a few diabetes-themed items.
This past Fall, they unveiled a pretty bold 90-second PSA video aimed at raising awareness — a mom walking into her daughter’s room, where the voice-over is of the daughter who happened to go undiagnosed. It’s dark and edgy, maybe a little overdramatic, but effective. One of the key taglines in the dialogue is, “Everyone thought it was the flu — even the doctors.”
So far, the video has reached more than 400,000 people and had over 165,000 views, and that number is growing daily.
The cast is pretty interesting, too, since both the little girl and the woman featured in the video are actually PWDs with type 1 themselves, who both had missed diagnoses that could have led to dangerous DKA or even death. The “daughter” in the PSA is 9-year-old Faith, who was misdiagnosed with the flu and ended up in the hospital with DKA just in time to avoid ending up dead in bed the following morning. The “mom” in the video is played by Keary, who is the co-founder of Grace & Salt with her husband Justin. She was diagnosed in April 2015 after going into a coma, being misdiagnosed with parasites, all while she and her husband were going through the process of fostering and adopting children in Uganda.
“We believe the backstories of each of these cast members will push the PSA to a whole new level, both nationally and globally. Not only will the PSA shed light to those who have no idea that Type 1 can hide, strike, and kill, it will introduce them to two survivors with real stories,” the group states.
Definitely a worthy cause, and we’re intrigued to hear more about how this new PSA makes an impact.
The powerhouse northern-California-based Beyond Type 1 group is also making waves on a separate, but similar campaign. Back in November for Diabetes Awareness Month 2016, this group began rolling out a DKA Awareness Campaign in collaboration with state chapters of the American Academy of Pediatrics, giving out materials on T1D warning signs and DKA for posting in pediatricians’ offices and schools.
In Fall, the group launched the campaign initially in Pennsylvania and sent more than 2,500 packages to pediatricians throughout that state, including a cover letter, posters, parent handouts, and a link to a digital portal where all the materials can be accessed (including a video and audio marketing with type 1 actor Victor Garber).
After receiving a lot of positive feedback in Pennsylvania, the group’s been working to expand the effort to other states: New Jersey, Massachusetts, Delaware and Ohio, as well as North Carolina where the now-famous Reegan’s Rule was passed, and Texas thanks to a pair of parent volunteers there.
“We are in discussions in two dozen other states and with more interest each day,” Beyond Type 1 Co-Founder Sarah Lucas tells us. “Our goal is to roll out the campaign in the remaining states throughout 2017.”
D-Mom Carolyn Boardman is one of the Texas volunteers, who created a sort of “physicians’ consortium” signing off on this Beyond Type 1 campaign in that state. She is a stay-at-home mom whose son was diagnosed 4+ years ago at age 11, and he was in DKA at diagnosis. Boardman says she was “blissfully ignorant of T1D until that moment.” But since then, “after realizing how close we came to losing him, I vowed to make sure I would do all I could to raise awareness of T1D.”
The campaign launched in Texas at the end of November and she helped get a group of local D-parents and well-known doctors on board. One of those doctors is the famous “Sugar Surfing” author Dr. Stephen Ponder, a pediatric endo there and longtime type 1 himself. The others are: Dr. Daniel DeSalvo and Dr. Maria Redondo and Dr. Jake Kushner from Texas Children’s Hospital, Dr. Anvi Shah from University of Texas Health, and Dr. Jill A Radack from Cook Children’s in Fort Worth.
At the start of the year, Dr. Ponder wrote a 2017 Type 1 Resolution on his blog, highlighting this campaign and calling on the community to “not miss any more new cases of type 1 before they get too far out of control.”
We applaud Beyond Type 1’s practical and impactful approach of taking the message directly to pediatricians around the country. Truly amazing work happening here!
Another group active on this front is Ease T1D, which was founded in 2015 by a trio of D-Moms focused on both general D-awareness and the warnings signs, particularly as it relates to legislation.
Importantly, they are building off the work of Reegan’s Rule in North Carolina (passed in 2015) and collaborating with D-Dad Tom Karlya, who was key in getting that legislation passed. Earlier in 2016, they worked with California Senator Richard Roth to get a resolution introduced on T1D awareness for the state. The resolution pushes doctors to educate parents of kids under 5 about T1D warnings signs at least once a year during regular visits.They hope to get that law passed in 2017.
EASD T1 also tells us they’re working toward fingerstick tests to be mandatory in any doctor’s office when children present any of the top four symptoms of T1D, in an effort to prevent a misdiagnosis. Along with that, the group is collaborating with Beyond Type 1 on their DKA Awareness Campaign and distributing warning signs info through a couple local school systems in California — the Corona Norco Unified School District, which is the 10th largest school district in that state, and the Yucaipa-Calimesa School District.
Clearly, there’s a need here for better awareness, and we’re thrilled to see so many efforts to fill that need. Especially noteworthy is how dots are being connected and so many are working together. Huge thanks to all involved!