In light of recent events, as an adult with Type 1 diabetes, I’m feeling more disconnected than ever before. Thanksgiving was again quite the diabetic challenge, and wouldn’t you know? Only one person in my life even thought to ask about how I might struggle with it — and that’s a dear old friend who lives 3,000 miles away and hasn’t seen me in person for ages. This is one of those moments where I find myself brooding…
Over the last four years, I’ve come to see that while the American Diabetes Association is not without merit, they offer very little by way of community or support for Type 1 diabetics.
The JDRF (Juvenile Diabetes Research Foundation) and CWD (Children with Diabetes) organizations both do great work, but they feel like places for kids with Type 1 and their parents — which of course they are.
Since I was diagnosed at the ripe old age of 37, I hanker for an organization that focuses on adults with Type 1. Where is the place for us? Other than here on the Internet, of course? There is no non-profit, advocacy organization, or annual conference for us LADA types. Or for children with Type 1 who’ve grown up to be adults with Type 1, for that matter.
With regards to LADA, as Lili pointed out in a recent post, there’s not even a G-D book on it, just a few mentions here and there in general diabetes books.
Last year, I actually floated the idea of writing a “First Year with Type 1 Diabetes” book for adults to our publisher, but he thought the audience would be too small to support sales. It seems to me that more and more people are being diagnosed with Type 1 diabetes as adults. This may be anecdotal, of course, since these are the people who’d seek out someone like me. It may also be a symptom of the fact that in years past, anyone over the age of 20 who presented with diabetes was simply assumed to be a Type 2, because sudden onset of Type 1 was virtually unheard-of in adults.
I don’t really know, because there’s so little data available on this phenomenon. A reader did recently tip me off to a new book called “Type 1 Diabetes in Adults: Principles and Practice,” but this is clearly a clinical guide for healthcare professionals. Where do we actual patients go to find out more about our condition, and about each other?
Some of you may know that our very own OC site administrator Allison Blass has been shopping the concept of an annual networking conference especially for adults with Type 1. I loved the idea, and even proposed calling the event “OneLife.” A conference like this is no small undertaking, however, and therefore might possibly piggyback with an event like TCOYD or CWD’s annual conference in Florida each summer. Any way it can be arranged, I hope to support it.
I think it was Bernard who commented on a recent post over at Aiming for Grace: Wouldn’t it be nice to have a camp for adults with T1? Maybe just a place for a weekend getaway where all the food was stamped with carb counts, and everyone around you also had to test and dose, and test and treat, and test some more. Where everyone around you understood your “diabetic agenda”?
Because — as is the case with many of you — nobody in my real, off-line, day-to-day life has a clue about all that frustrating effort I’m putting out 24/7 just to keep myself alive and healthy. I often wish to spend time with some people who do understand. I guess I’m just feeling displaced.