You are a hero and role model of mine [Shoshana is another, but she's everybody's -- or should be :) ].
Your blog is a bull's eye. (Actually a series of them.) And as noted by yourself and others, your insights don't apply just to T1 but in some degree to every member of this "club no one asks to join", and with a vengeance to anyone on insulin.
I was diagnosed with T2 -- correctly, can you believe it?!? -- at age 45. Same year as you, as it happens. It took me more than 15 years to figure out that insulin was the right answer, and even then it was my idea, not a doctor's. Sound familiar? I only wish I'd demanded it a decade earlier. Might have a few more working beta cells left, rather than the three I do have.
In my view, the sort of misdiagnosis we're talking about here constitutes malpractice no matter what viewpoint you approach it from. "Malpractice" because there is simply no valid excuse for it; the data is out there for all to see, and anyway, doctors get paid to know better. But of course I'm preaching to the choir. ;-)
The sprint-vs.-marathon analogy is perfect. I've used it dozens of times. It's so very easy to miss the forest for the trees (read: get discouraged by daily fluctuations), but that's not the nature of the game. Eyes on the prize!
And you are so right about doctors . . . you have to be the one in charge, even if your doctors happen to be the best anywhere. Nobody knows your body like you do, no one else is there 24x7 to do the job, and for absolute certain no one else has more at stake. But having a doctor who treats you like a peer and not a wayward employee makes all the difference in the world. When I last changed doctors, I went to the trouble of actually interviewing prospects to find someone who would be on my wavelength. One actually said, unprompted, "I don't know everything." (How often have you heard that from a health care professional?) He's now my PCP.
Melitta, you have been and continue to be an inspiration to me and in fact - a true hero. I remember when I first came to TuD, I felt like a tremendous burden had been lifted when I met you. You knew immediately the trauma and frustration of misdiagnosis. You understood!!! I so needed someone just to "get it." Not only did you "get it" you helped me better manage my life with diabetes -- particularly the emotional side of diagnosis (and misdiagnosis). Then I watched you evolve into a true advocate and champion for those with adult onset T1. I am forever grateful to you. You made me stronger.
Hello Melitta, you have made a wonderful post. It is indeed possible to have T1D long term, without serious complications. I have managed very well for 69 years, and am having a healthy, happy life. More than 3000 50 year Joslin medals have been awarded. I have the 50 year medal, and Shoshana has the 75 year medal. There is a Joslin Medalist Study taking place in Boston. The purpose of the Study is to find the factors that have enabled so many of us to live 50+ years without serious complications. Approximately 1000 T1D's have participated in the study. Many interesting things have been found.
Great Blog Melitta, I can't believe you made it through going off insulin after dka. I just read in a letter from jdrf that I received when I got my care package in November that there are, I think, 15,000 children and 15,000 adults diagnosed as type 1 each year in the US- so the number of new diagnoses per year is the same for each group apparently. I was informed again recently, by another doc who I saw for vertigo, a neurologist, that mostly children get type 1, I said- not true, but I hadn't even read these statistics then, or if I had I had forgotten about them. I'm amazed at some of the terrible lack of knowledge that abounds in the medical profession surrounding all of this.
Meee, JDRF still struggles with admitting that new-onset Type 1 diabetes is far more common in adults than in children. The 15,000 children/15,000 adults comes from the U.S. Centers for Disease Control and Prevention’s (CDC’s) most current information on the prevalence and incidence of Type 1 diabetes (Diabetes in America, Chapter 3, “Prevalence and Incidence of Insulin-Dependent Diabetes” (Diabetes in America, Second Edition, 1995)). Although people who use that reference as a source of incidence statistics state that there are about 30,000 new cases of Type 1 diabetes each year and that half of those cases are children; in fact, that source states that children (<20 years of age) account for 13,171 cases and adults (>20 years of age) account for 16,542 cases, for a total of 29,713 new cases of Type 1 diabetes per year, 56% seen in adults. Thus, new cases of acute-onset T1D in adults exceed new cases of acute-onset T1D in children. Additionally, that source states that there is an unknown number of adults identified as having Type 2 diabetes who have slowly progressive Type 1 diabetes. And as we well know, about 10% of "Type 2s" are autoantibody positive, have been misdiagnosed, and have Type 1 diabetes. Michael J. Haller MD, in Type 1 Diabetes Sourcebook (ADA/JDRF, 2013), says “Importantly, adults with LADA may represent an additional 10% of those adults incorrectly diagnosed with Type 2 diabetes.” The myth that Type 1 diabetes is a childhood disease is extremely harmful to those of us who were diagnosed as adults.
Thanks for posting these Melitta, I remember searching for info about this after I was diagnosed and not being able to find much of anything. I agree it is probably higher than we think due to misdiagnosis.
Sorry, the picture posted before I realized - I got this last week! It’s for 25 years although I’ve been T1D for 33 years but it is always nice to get awards!!
