Me at three. Pre, pre, pre-type 1 diabetes?

The news was announced today about a new classification approach for the development of type 1 diabetes (T1D). Three distinct stages will mark the development of the disease – from its earliest pre symptomatic stages to full blown onset. The aim of staging is to help preserve more insulin-producing beta cell function and make further strides toward prevention.

JDRF and the American Diabetes Association, with several leading diabetes research and clinical organizations, collaborated on the development of the staging approach. The American Association of Clinical Endocrinologists, the International Society for Pediatric and Adolescent Diabetes and The Leona M. and Harry B. Charitable Trust have already endorsed it.

“We know type 1 diabetes begins long before insulin dependence occurs, and the best time to halt the disease’s progress is before the loss of insulin-producing pancreatic beta cells,” said JDRF’s Chief Scientific Officer, Richard Insel, M.D. “Decades of research in at-risk individuals have provided the foundation for developing this new three-stage diagnostic approach, which we believe will help optimize the design of clinical trials to prevent symptomatic disease and more quickly evaluate interventions.”

Desmond Schatz, M.D., president-elect, medicine and science at American Diabetes Association explained, “Type 1 diabetes is diagnosed relatively late in the disease process.” Now pre-type 1 diabetes can be identified both in higher risk relatives and the lower risk general population by using a combination of genetic, immunologic and metabolic markers and categorization of the natural history of the early disease process which is now possible.” According to Schatz this will facilitate prevention studies at different stages of the disease process.

Personally, I always keep hearing as well that figuring out how to prevent type 1 diabetes may be necessary before we find a cure.

Regarding staging, two years ago I wrote on The Huffington Post that we should characterize type 2 diabetes in stages – “The Lie That’s Killing Us: Pre-Diabetes.” Diagnosing people with “pre-diabetes” doesn’t inspire the action that calling it stage 1 of type 2 diabetes likely would. Many of the current 80 million people with “pre-diabetes” will go on to get type 2 diabetes. Yet, if they heard that they had stage 1 type 2 diabetes they might well make the lifestyle changes – eating a healthier diet, losing weight, being active and possibly medication – that might prevent it. I’m still in favor of this.

For myself as a type 1, I remember how surprised I was years ago when endocrinologist Gerald Bernstein, who ran the Friedman Diabetes Center in Manhattan, told me that while I got type 1 diabetes at age eighteen, I probably began developing it when I was twelve. And I have a theory why that might be so.

We talk about type 1 diabetes coming on like a bullet train but apparently there’s a slow escalation and now researchers are able to see distinct metabolic markers of the disease’s progression. Marking the stages of the disease will help facilitate prevention studies, and hopefully one day, prevention – and a cure.

I’ve just read over a number of my recent blog posts and realize how heavy they’ve become on food. Without realizing, healthy eating and how to achieve that, have become consuming passions. Now you ask, “So how can pancakes be your favorite hotel food?”

Well, I am human after all. I travel a lot speaking at conferences, speaking as a peer-mentor with the A1c Champions program and having a Dutch husband. That means I’m often lodging in hotels. My favorite breakfast at a hotel is not the all-you-can-eat buffet. I know I’d eat more than I should and I’m not interested in most of what’s on offer – the breads, muffins, cold breakfast cereals…Nope, I want two freshly scrambled eggs and one pancake.

If I could I’d wave a magic wand and make it a buckwheat pancake, trust me I would. But hotels have not gotten this far on the healthy breakfast spectrum. So buttermilk fills the bill.

I order my meal as two sides: Two eggs and one pancake. And most of the time after the strange look from the server, he or she becomes very accommodating. And I’m very specific, “One pancake please, no sugar, no syrup, no butter, no fruit.” When it comes I remove the orange slice and parsley garnish, which always seems to be there, and sprinkle my pancake with a little salt. A bite of sweet, dense and chewy pancake with the warm egg is quite delicious. Really, try it. Then, if the gods are smiling, I have time to head to the hotel gym and bring down the outrageous blood sugar rise one pancake causes.

Surfing this morning on pancakes, this recipe looks great if you’re making them at home – no flour, but almond meal and flax seed. If I actually cooked pancakes at home, I’d be sure to try it. Somehow I just like to keep my pancake confined to hotels.

A few days ago I posted an article on The Huffington Post, “The Invisibility of Type 1 Diabetes.” In three days it’s been shared more than 6,000 times and “Liked” by more than 35,000 readers.

I don’t tell you this because my head (as seen above) is now too big to get through the door. No, but because it touches me immensely to have what i write resonate with others and help them feel less alone. Especially when the comments left let me into a window on their lives:

“This is just one of the best things I have read on Type 1 diabetes – my daughter was diagnosed 9 months ago at age 17. Thank you”

“Such a well written piece. In fact, the only thing I have read that so accurately describes what I, and I am sure many others, feel on a daily basis. I am 41 years old and have been a type 1 diabetic for 31 years. People often comment on how easy I make it look but don’t know what I have to do everyday. It could be worse but still holding my breath for that cure!”

“Thank you for telling your story.. It echoes my daughters… She is 9… It’s nice to not feel alone in the daily fight”

If you missed it, this other post I wrote two years ago, of which I wouldn’t change a single word today, is still for me the ultimate experience of living with Type 1 diabetes.

Thank you all for reading and reaching out.