Just back from the annual CWD conference at Disney’s Coronado Springs Resort. This is a well organized event and well attended - something that every family with type 1 diabetes should have a chance to experience at least once early on following their induction to the exclusive type 1 diabetes club.

I’ve already been beaten to the blogosphere by my friend David Mendosa and his post about the kids and how special they are. Similar to diabetes camp, these kids are there letting it all hang out and making friends from all over the country and other countries too. We had a booth there and we went with a D-Camp theme sporting a tent to represent that managing your diabetes is something you do everywhere - not just at home or when you go to doctor visits.

I love having fun with the kids at camps and conferences and when some of them saw the tent they would ask if I slept in it. Would have been a great way to save money at Disney. Of course i said yes and then told them they should have seen the campfire!

“Really?” (eyes bugging out).

I had several lengthy discussions with parents of teens. There is a common problem w kids growing up and needing their independence combined with a disease that isn’t friendly to these teens who aren’t quite ready to fly on their own. For many of these kids, just keeping them alive until they mature is the goal and that’s a pretty good accomplishment considering the 24×7 nature of type 1. For others, they don’t fight so much for control and they do fine. Still other kids, don’t engage and rely too much on their parents leading to other issues when it’s time for them to leave home. They don’t have the slightest idea how to manage their diabetes and end up taking a crash course in personal diabetes care for a disease they’ve had for years.

Well now to catch up before I leave for Texas Lions Camp this coming Friday for a week.

I’m at the annual Children With Diabetes Friends For Life Conference in Orlando and talking to lots of the most informed families there are about how they manage diabetes. It’s funny how you can still have such a tremendous cross-section even at an ‘exclusive’ event like this. It is expensive but then you have ’scholarships’ for deserving families that get all or most of their expenses paid in order to attend. That’s great because it helps to keep this from being only for the well off.

You also have the people here who are brand new and here to learn vs the ones who “already know everything” plus most of the people falling somewhere in between. Then you have MDI, pumpers, CGMS early adopters… so the full range of therapies. All shapes, sizes, races, fitness, etc… too.

However, the one thing that 99% of them have in common is a stated need for simplicity; simple tools that just work and help them to manage better. This is the role of automated diabetes management systems like GlucoDYNAMIX and to a lesser degree, web-based systems like the ones by Medtronic and Abbott. What’s clear to me after two days here is the need for an easy to understand feature comparison of what patients need vs what providers need vs what’s available in… let’s call it ADMS 1.0 and the roadmap to ADMS 2.0

Of course my bias is on simplicity and true automation so the GlucoMON(R) wireless glucose meter monitor gets my vote for getting the data into an ADMS and should probably be treated as part of an overall ADMS representing data collection. I’ll have a feature list put together soon from the patient’s perspective (input welcome). Then the provider’s feature list. And finally, we’ll get some input on comparison to actuals from unbiased sources and a neutral third party to host it going forward.

I just returned from a diabetes education cruise to Alaska. Dr. Barbara Anderson and I hosted a conference on state of the art diabetes care for an international group of physicians. We had doctors from as far away as Australia. The meeting was absolutely wonderful, but the weather was even more remarkable. Long days and (at times) warm temperatures and sunny days were the highlights of this trip along Alaska’s inner passage.

We also hosted a Family Diabetes program on the cruise and had the good fortune to get to know several families dealing with type 1 diabetes with distinctly different levels of experience.

One family (with 42 total extended members on board) was only 3 weeks into their son’s diagnosis of type 1 diabetes (he is 11 years old). It was a co-incidence that we were hosting the camp at sea program when they signed up for the cruise. They had signed up for the cruise several months before. The boy is struggling with the diagnosis and day to day care that his diabetes team has asked him to do: (multiple daily injections, carb counting and frequent monitoring). At one point his parents said he told them he “wanted to die”. Although always in good spirits around Dr. Anderson and me, he is facing many of the same demons many of us have experienced when given this diagnosis of diabetes. He didn’t do anything to bring this on. Why him? It’s the question we all ask at one time or another. His parents are quite appropriately worried and still need to get more diabetes education. Having seen another young girl on the cruise using the insulin pump, he seemed very interested. His dad told us he is going to enroll in a research study next week to try and arrest the destruction of the remainder of his insulin producing beta cells in his pancreas.

What was so typical of this family is the obvious need for diabetes education. The parents were appropriately concerned for the well being of their son. In their attempt to help their son, they create a diabetes care “reality” based on bits and pieces of knowledge. However, ignorance abhors a vacuum and unless gaps in their knowledge are not filled by an experienced diabetes educator, there is a strong tendency to fill in knowledge gaps with supposition, myth and speculation. We were comforted by the fact that they had more visits scheduled after the trip. We were reassured that they recognized this need and would be seeking to fill these gaps. Hopefully more reinforcement of survival skills will occur and new information will be discussed. The key to long life with diabetes comes from what one knows and how well it is applied.