So at the ADA meeting, the rep from the Milwaukee office asked me to explain LADA to her. Am I the only one who finds this disturbing?
I guess that depends on what you are calling a “rep.” There are lots and lots of folks at the ADA and the JDRF and other diabetes related organizations who don’t understand LADA. If it was an executive director or better from the ADA, then yes, I would be concerned but any of their “in the trenches folks,” not really. Think about the prevalence, 10-ish percent of folks with diabetes are autoimmune, of those, 10-ish percent are LADA by its official definition. Personally, I just take those experiences as another education opportunity, regardless of whether I think the audience should know better…
Just to clarify a bit, based on all the scientific studies in peer-reviewed journals–LADA is usually about 10% of “Type 2” diabetes, in other words, 1 in 10 people diagnosed as “Type 2” actually has slow-onset Type 1 diabetes (LADA). LADAs are excluded from the 10% autoimmune figure, but of course LADA is autoimmune diabetes, so in fact about 20-25% of all diabetes is autoimmune.
Several things come to mind. First, I actually don’t think it’s good to call “slow-onset Type 1 diabetes” LADA. It’s Type 1 diabetes, by definition. Don’t call it 1.5 or LADA, it is Type 1 autoimmune diabetes according to the definition of the Expert Committee on Diagnosis and Classification of Diabetes Mellitus. We who are diagnosed with Type 1 as adults far outnumber childhood-onset Type 1 diabetes (by 2 to 3 times). Second, I have been trying for years to get the ADA to acknowledge the prevalence of Type 1 in adults (both rapid-onset and slow-onset) and provide appropriate information. The response I have gotten is angry denial, and attacking me personally. Some change is happening–the May 2010 issue of Diabetes Forecast had an article on LADA (the article got some facts wrong, but in general was good). So yes I find the ADA rep’s ignorance disturbing, but it fits in with ADA’s irrational denial of adult-onset Type 1/LADA. It is sad, because in the U.S., the “go to” organization for diabetes is the American Diabetes Association, but you aren’t going to get much help from them.
I agree, Melitta, that as a LADA I am a Type 1, and that’s what my “official” diagnosis is. (I put quotes around that because ultimately I just told the doctors that’s what I am and they wrote it down!). But I do see some value in referring to LADA/Type 1: To me, at this point, I just think of myself as Type 1, but four years ago when I was misdiagnosed it would have made a big difference if someone had recognized me as LADA, not Type 2. The “powers that be” are forced to recognize Adult Onset Type 1 when they see an adult in DKA with little or no insulin production. But they are going to fail to recognize when someone like me walks through their office: 58 years old, still a bit overweight though losing rapidly, managed fine on oral meds for 15 months thereafter. By calling attention to LADA as a separate entity we hopefully raise the awareness of PCPs who see someone like me walk through their door not to make snap judgements. Just my thoughts. Now “Type 1.5” that you can surely trash imho because it sounds either like software or “halfway between type 1 and type 2”, neither of which is true!
As for the ADA, yeah, pretty pathetic. At least the JDRF is making good strides on recognizing all the different versions of type 1 adults walking around. By the way, all my medical contacts, including my cardiologist say “so you’ve dealt with this all your life” when I say “Im a type 1 diabetic”, so I end up explaining anyway! I even had to show my pump and infusion site to the cardiologist… He was fascinated!