Hello, my name is Anthony, and I have been a Type 1 diabetic for 20+ years. I found that the education post-diagnosis with Type 1 diabetes was, well, abysmal at the time. Unfortunately, it seems that things have remained fairly stagnant in this area.
I’m here to gather feedback from our community around what educational techniques worked well for you and your child post diagnosis, and what areas were lackluster. Maybe we can learn from each other.
So please post here to share your stories, so that hopefully this area of healthcare education can be improved for future (and current) diabetics. Here are some thought starter questions to get you rolling, however, feel free to expand on them:
How old was your child at diagnosis and how long ago was it?
What was the diabetes education like at the hospital? What kind of content did they send you home with?
What were things you discovered post diagnosis on your own, that you wish would have been taught to you more clearly or sooner?
What were the hardest concepts to grasp, either for you or your child, when learning about managing Type 1 diabetes? (e.g., insulin dosing, blood sugar monitoring, diet adjustments, carb counting, device hardware)
Is there anything with the formal education that connected well to you and your child?
Anything else you care to share about your experience
Thanks all! Hopefully we can all share, learn and grow
We were taught to take exactly the same insulin at exactly the same time and eat exactly the same food at exactly the same time everyday. We could “exchange” carbs
That I could take beef derived insulin R to cover carbs and snack whenever
….. well blood sugar meters weren’t invented and so we boiled urine in Benedict’s solution to see if your blood sugar was very high or ridiculously high 50 minutes ago so that’s all the tech I had. The hardest concept was why was pizza carbs different than rice carbs.
Ummm we were told that a cure is 5 years away. That was nice to hear.
I was told I would be dead or disabled by the year 2008. I am happy to report that my ultimate age was grossly underestimated.
Education, both for People with Diabetes [PwD] and physicians diagnosing diabetes and attempting to treat, manage, and EDUCATE patients appears to be very lacking and much needed. I’ve discussed this glaring issue with physicians, including an endocrinologist who asked me for advice on her attempt to get the word to other physicians.
As far as being able to "Tell my [diabetes] story, three places other than this forum currently recruiting individuals to write a personal story are Breakthrough T1D, T1d Exchange, American Diabetes Association.
My response to the questions you presented would be almost identical to what @joe wrote but I’ll add another 23 years to his story. What I will add, is that within three years of my diagnosis, I had to learn to doctor myself, “Dr. me” - and during the first 10 years, I messed up and now I’m paying for that.
But rather than dwelling on ancient history, I should focus education on the insulin formulations, the tools, the gadgets, the science we now have - concentrate on the period since the first rDNA insulin - the first non-animal insulin - that was developed in the 1970s aboard the US Space Station. We should read and study information developed and published by trusted diabetes publications. An example, the main page of Breakthrough T1D has links to wonderful education materials - from the very basic “need to know” to breakthrough advances.
Anthony @Anthony-HealthOdysse, an additional thought about furthering education and assisting PwD develop effective management technique. This would be an expanded use of AI, artificial intelligence.. AI is used in Dexcom G7, and I assume also in the G7-15.
When I suggest more AI, I accept only “Predictive AI” at this time which might offer suggestions as to when to dose with insulin or when to skip or reduce insulin when eating - stuff already offered by a half dozen infusion pump manufacturers so, this “tool” would primarily assist the majority of patients not pumping.
My playing around would keep me aware from “generative AI” for educating PwD - where a person asks a question and receives an AI response. It is still early, but I noticed certainc"diabetes myths" being offered for diabetes management.
My child was diagnosed at less than 2 yrs old in 2020. Only option around here is the local Children’s Hospital. I think they did a great job educating and helping us. We were sent home with a fair amount of homework and literature and they showed us the carb counting apps and went through how to use the obligatory medical supplies. We had the recording sheets to keep track of everything and even printouts w/ formulas for mathing boluses. A few weeks after diagnosis we attended the next available class that they have for the newly diagnosed. There were maybe 6 or 8 families. The class was more general diabetes and nutrition education. I think sick day protocol was explained a little more. We still use the endo clinic associated with the hospital.
Observations: They started us with the basics and didnt over complicate it. We were kinda sorta advised to not dive too deep into T1D land too quickly. They wanted us to learn to manage without tech, but 4yrs later we’re on a pump and CGM. All these things have led to a positive outcome for us.
1 thing that could have been better, maybe. Some education on dealing with insurance, and the throng of prescriptions and those 3rd party device maniacs. It still confuses me so maybe my brain just refuses to understand nonsense.
