There certainly is no secret how strongly I feel about the missed diagnosis of type 1 diabetes (T1D). I spend many long hours after work and at lunchtime spreading the word so we can stop the seriousness of kids seeing a medical professional with flu/virus like symptoms and no testing being done–resulting, many times, in disaster.
I even created a “town hall” survey to collect what I call “unscientific numbers” on what is happening in this world. I was thrilled to announce recently that the folks at GLU/T1DExchange were creating a survey with an IRB (Institutional Review Board) approval to obtain real scientific data to show the world.
THAT SURVEY IS NOW READY!
Before I share that link, you need to know that you must become a member of GLU to take the survey. You can opt out of any contact from them if you like, but they will be updating us on the results of the study so you may want to consider hearing from them. There has to be a control group according to the IRB regulations so you must join.
PLEASE KNOW HOW CRUCIAL IT IS FOR US ALL TO BE INVOLVED IN THIS STUDY/SURVEY, ESPECIALLY IF YOU HAVE BEEN VICTIM TO THE MISSED DIAGNOSIS OF T1D. IF WE DO NOT HAVE OFFICIAL DATA THAT WE CAN POINT TO, NO ONE WILL HEAR US.
Speaking as a parent to a parent, or an advocate for a person with diabetes, please take the time to do this survey and please share this wherever you can. You all remember the faces of the kids I have posted today. They should have never died. You all read about them during and after each of the tragedies happened-they died because their diagnosis was missed. You have a story also. Some of your kids also got very sick as well–we must be able to show and tell those stories.
We can make a difference, and we must make a difference. Please take the survey and share this story anywhere you can so we can capture the most amount of people possible. I’m so humbled and grateful to GLU/T1DExchange for hearing the Child’s Cry for Change from voices that can no longer speak for themselves.