Great personal news: my piece in Popular Science about anti-CD3 monoclonal antibodies (currently best known as teplizumab) and Type 1 diabetes was just featured on the New Hampshire Public Radio show Word of Mouth. (You can read about the segment, and listen to the interview, here.)

It’s always great to get to talk about something you’ve worked hard on, but I found myself getting surprisingly nervous before this particular interview. Part of it was my typical worry that I am somehow going to lose my ability to speak English the moment the host asks me a question. (Words? What are words?) But this time, there was an added challenge: talking intelligently about immunology — an area in which I am not an expert — about a complicated subject in a way that the general public could understand. (You guys will have to let me know how I did!) Luckily, words did indeed come out of my mouth, and by the end of the segment,  I was actually enjoying myself. But it’s interesting to feel your body pumping up the adrenaline — and I have a feeling that may have had something to do with the fact that my blood sugar went high this morning and has only now come back down.

And that’s very good news: it’s 2:15 in the afternoon, and I haven’t eaten lunch.

Do you have a great idea for Type 1 diabetes research? Check out this contest from InnoCentive, which is offering a cash prize of between $2,500 and $5,000 for the best ideas for future projects. The details:

This Challenge is asking InnoCentive Solvers to formulate well-defined problems or hypotheses aimed at advancing our knowledge about Type 1 Diabetes and ultimately eradication of the disease. This is a somewhat unusual Ideation Challenge in the sense that the Solvers are not expected to provide a solution to any problem. Rather, they have to define problems or areas requiring further exploration and research. Ideal problems are those whose eventual solution will greatly expand our knowledge of Type 1 Diabetes and advance our ability to cure/manage the disease. Once formulated, the proposed problems will form the basis of new research projects pursued by scientists at Harvard University and elsewhere.

I’m not sure how scientific these entries need to be (though I doubt, sadly, that one of my personal big questions –why does yogurt affect my blood sugar differently than cottage cheese — would qualify). But still, for all you scientific types, it’s worth checking out. Just keep in mind: the deadline is March 15th.

On a different subject, this morning I went to the Apple Store for a One-to-One training session in the new version of iMovie. As my teacher showed me some of the new features, he made disparaging comments about my personal favorite video editing program, Final Cut Pro. “The new iMovie is just so intuitive,” he kept saying. “It makes Final Cut’s interface look like it’s from, oh, I don’t know, 1999.”

It made me think of my recent experiences with the cutting edge of diabetes software — and how, when it comes to diabetes design, a product reminiscent of 1999 would actually be an improvement. If only Apple had an interest in medical software.

Here’s something I don’t like: the idea that a piece of technology I rely on to keep me alive could somehow kill me. I’m speaking not of Toyotas, but of insulin pumps — according to this piece in the Wall Street Journal, “the Food and Drug Administration said Wednesday it has seen an increasing number of hardware and software problems with insulin pumps, tiny devices worn by thousands of diabetics to deliver insulin.” And so on Friday, the FDA brought together an advisory panel of outside medical experts to discuss what actions might be taken to “‘minimize risks associated with the devices in these recall situations.’”

As someone whose pump once suffered a “button error” and began spraying insulin into the air like a fountain (or, less poetically, a peeing dog) I’m glad to hear that pump problems are something people are paying attention to. But I’m also curious as to what kind of issues they’re talking about. According to the Journal,

Manufacturers are required to report problems potentially associated with devices to the FDA. The FDA conducted a review of insulin pump-related adverse-event reports and found nearly 17,000 reports from Oct. 1, 2006, through Sept. 30, 2009. The reports don’t necessarily mean a device caused a problem but serve as a signal for more investigation. Even if a device is functioning properly patients can inadvertently misuse the device. Of the reports, about 12,000 reported a patient injury (such as problems with blood glucose levels) and 310 deaths.

The agency said the information provided by manufacturers involving deaths “was typically incomplete.” The agency said in 225 of the deaths reported the device problem was listed as “unknown,” although in many cases the device was never returned to the manufacturer for additional follow-up.

However, in 41 death reports, a device problem wasn’t identified but the circumstances involving the death involved diabetic coma and problems associated with blood-sugar levels being too high or too low, suggesting the device may not have been working properly.

So, uh, what are we supposed to conclude? Is the problem the devices, or the people using them?

I think it’s very important to keep track of these reports — since this is a situation where a product failure could kill someone, I want the companies who make insulin pumps to feel like there’s a fire under their ass. But at the same time, one of the reasons we don’t yet have a closed loop system (i.e. artificial pancreas) is because companies and the FDA are worried that the devices (or people using them) could make mistakes. Which, granted, they probably would — the question is whether those mistakes would be more severe and dangerous than the mistakes people with diabetes make every single day when we try to gauge interactions between insulin, exercise and meals.

I guess this is what I’m saying: it’s hard to draw conclusions from this article about how often the insulin pumps themselves are the problem (and how concerned we users should be about possible recalls). Looking at it on a more global scale, though, I have two competing desires. First,  for companies to pay close attention to product flaws that might kill people. At the same time, I don’t want an obsession with technical perfection — in the case of an artificial pancreas —  to get in the way of progress.

Bonus: Reading materials for the FDA conference yesterday

Yesterday I had the chance to participate in a focus group for a computer program for a CGM. I love focus groups like this — you get a glimpse of upcoming diabetes products, you have a chance to provide feedback to improve it, and at the end of the hour, they hand you an envelope with $100. It’s a pretty great way to spend a morning.

But yesterday’s session left me disappointed. It was for a computer program meant to work with a continuous glucometer — you download information from your meter and then use the program to look for patterns, keep track of trends, etc. I can’t say much about the specifics of the program (they tend not to like that, the companies developing the products) but I will say that an odd thing happened as I was speaking with the interviewer: I got a chance to speak directly with one of the people  who was working on the program.

The room had a one-way mirror (i.e. I saw a mirror but people in the other room saw me) and after I’d spent several minutes trying to clarify a particular aspect of the product that I found confusing, there was a knock on the door and a man entered, stepping in to answer my question. I thought we were going to have a pleasant back-and-forth, me explaining what I didn’t understand and giving him feedback from a diabetic’s point of view,  him clarifying the reasoning behind this particular aspect of the program. But instead, he aggressively repeated exactly what the woman conducting the interview had told me — and when I again explained why I didn’t understand it, loudly exhaled and just said the same thing.

Now. I understand that, despite my best intentions, I can occasionally come off as rude. Case in point: a romantic dinner with my husband-to-be in which we shared with one another our life dreams (you know, that conversation. Maybe date five?). I was asking what I thought were astute and attentive follow-up questions, but Peter — lovely, sensitive Peter — stopped what he was saying and said “What the hell is your problem?” (A phrase, I might add, that has never been repeated in the course of our five-year relationship.) Apparently what I thought was a sensitive follow-up question came across as me grilling him about loopholes in his list of life aspirations. Whoops.

Anyway, perhaps I was doing some of the same things to Mr. Programmer Guy. It is true that at some point before he came in, I’d referred to the screenshot as looking like “something from Microsoft, circa 1993.”  But dude — I wasn’t on a date. I was being paid to give feedback on a product they’re presumably going to try to sell to people like me, and I was pointing out things that did not make sense. I do  not think I was being the asshole.

But regardless, the guy kept repeating, in condescending tones, the same explanation he had given previously (okay, fine, the question was about how to look at situations where one particular event caused a hypo- or hyper-glycemic episode, and my question was about how the software was able to pick out what the specific cause was, given that multiple factors can work together to cause your blood sugar to rise or drop). And as he continued speaking, the dynamic in my mind shifted from “Cool, this guy is working to help improve the lives of people with diabetes” to “He clearly has no idea what it’s like to live with this disease.”

I hate that. I want to be excited by the idea that there are companies out there trying to build on patients’ suggestions and create well designed, intuitive tools to help improve our lives. But after being talked down to by this guy, I felt pretty certain that he and his team are not actually going to change anything based on my suggestions. The way I see it, that’s not just frustrating; it’s a real waste.

Which is why I’m happy to announce that Amy over at DiabetesMine just launched the 2010 DiabetesMine Design Challenge — a chance for everyone from patients, and parents to caregivers, students, entrepreneurs, developers, and engineers to come up with innovative diabetes devices or web applications. Got an idea? Check out the video below.

The other day I participated in an interview with Riva Greenberg about living with diabetes (more on our conversation later) and, as tends to happen when two diabetics start talking, we ended up on the subject of breakfast. “It’s my hardest meal,” I told Riva, confessing that after eating Fage 2% Greek yogurt nearly every morning for oh, the past five years, I have finally reached my breaking point. Maybe it’s the Symlin, maybe it’s general fatigue, but I can no longer make it through a cup full of the stuff without feeling a little like I’m going to puke. The same thing happened to me with Egg Beaters omelettes and cottage cheese, both of which were my go-to breakfast for the first few years after I was diagnosed. (I now eat real eggs, usually for lunch.) I staved off my current breakfast crisis for a while by turning my fruit and yogurt into smoothies — but even that has recently become stale. Riva listened, empathized, then asked me a simple question:

“What about oatmeal?”

What about oatmeal. A query so innocent, so straightforward, that I was surprised to actually feel my stomach jump. Oatmeal? For breakfast? What was she doing, trying to kill me?

Riva was not trying to do any such thing. Instead, she shared with me her go-to breakfast recipe, a combination of oatmeal, cottage cheese and various other good things that we hope to soon highlight on the site. It was a perfectly reasonable suggestion — a serving of oatmeal has about 23 grams of carbohydrates. Add some peanut butter, and you slow down absorption. And besides, I’m the type of person who insists to everyone I meet that there are no “forbidden foods” in diabetes — it’s just that certain foods aren’t worth the trouble it takes to manage your blood sugar after you eat them. Krispy Kreme donuts, therefore, are out. But eating oatmeal is hardly a sin.

Try telling that to my psyche — as I felt my stomach drop, I realized that there are certain foods whose very mention can make me feel a jolt of panic. Sometimes that reaction makes sense (“large Coke”); sometimes it is totally irrational. Like with oatmeal, for example. Or beans. Say the word “lentils” to me and I guarantee  my heart rate will increase, despite the fact that they have a low glycemic index and are so unproblematic that I end up overbolusing nearly every time I eat them.

I’m fascinated by the emotional side of diabetes, and already devote a lot of thought to the swings in my self esteem I feel every time I see the number on my glucometer’s screen. But it wasn’t till I noticed my reaction to Riva’s favorite breakfast that I realized I’ve really started assigning emotional value to foods as well.

Anyone have panic foods of their own? Tell me about them in the comment section.

I’m still having difficulty accepting Twitter as a source of news, but nonetheless, I was interested by the tweets of Elliott Yamin, the Type 1 diabetic and former American Idol contestant who was in Chile during this weekend’s devastating earthquake.

If you’d like to read the full text of some of his tweets, check out Access Hollywood – my 160-character limit doesn’t allow me to fully express his creative use of abbreviations. But what interested me is his perspective on the disaster as a Type 1 diabetic. “Imma Type 1 diabetic, and was sppsd 2 leave sunday,” he wrote, according to Access Hollywood. “I only packed enuf insulin pump supplies 2 last til then….airports r closed!”

You might be quick to point out that Elliott Yamin is just one visible example of a much larger population of Type 1 diabetics in Chile (or, for that matter, Haiti), for whom a natural disaster like an earthquake could have even more devastating effects — and who don’t have easy access to Access Hollywood. But that’s my point: the horror of both situations is difficult to wrap one’s mind around. Having a particular person in mind helps make the situation more real, even if the person writing is an American best known for his hit single “Wait for You.” It also highlights the special challenges all of us face when traveling with diabetes — we can usually navigate our normal lives without calling too much attention to our disease. But it just takes one event — a malfunctioning pump or, in this case, a natural disaster — to remind us of the additional challenges diabetes presents.

A practical resource: one good way to help other diabetics on the ground is to check out the International Diabetes Foundation, which we mentioned in the tip section after the disaster in Haiti.

In the meantime, Yamin is continuing to send updates of his situation that are more elaborate than his intial tweets. “This country isn’t very keen on insulin pumps,” he recently commented. “Supplies for my pump are running low. Hospitals here are very crowded, and as you can imagine, they are dealing with bigger things.”

The source of these quotes?  Fox News’s “Pop Tarts.” And to think I made fun of Twitter.

(In all seriousness, best of luck to Yamin and to all the diabetics —  Type 1 and Type 2 — currently stranded without supplies. I hope that help comes soon.)

Now there’s a headline I never thought I’d write. Before last weekend, I’d never eaten at a Carl’s Junior. I’m grossed out by the idea of industrial meat (anyone seen Food Inc.?) and, while I’m not a vegetarian, I try to primarily eat meat from animals that I think were raised in a humane way. But there are times when even the most adamant of McDonald’s haters can be tempted by the siren song of processed food.

And those times are road trips.

Last weekend, after my pump-in-the-toilet fiasco, my husband and I were on our way back from Yosemite National Park and got hungry for lunch. California’s Central Valley might grow ingredients for salads, but the establishments that line its highways do not serve them — so we were eventually left with what I considered two unappealing options: Jack in the Box, or Carl’s  Jr.

Jack in the Box was out of the question. Many years ago — 15? 20? — there was a nationwide scare over Jack in the Box. Perhaps you remember it; I believe it had something to do with a rat’s foot ending up in a hamburger.  All I know is that I was grossed out, and that since then, every time I see the Jack in the Box logo, I think of minced rodents. I don’t care how much time passes (or the fact that similar rat catastrophes happen in meat processing plants all the time): I’m never eating there.

Carl’s Jr. it was. And on its menu, I believe I found a near-perfect diabetic road trip food: the “Low-Carb Six-Dollar Hamburger”  (offered, confusingly, for less than six dollars). What makes this low-carb? They replace the bun with lettuce.

I was doubtful at first. I’m so grossed out the idea of fast-food meat that I actually welcome the idea of a bun — not so much because I think they’re worth the carbs, but because they hide some of the texture and taste of the meat. I worried that if I were to get the low-carb burger, stripping down my meat’s protective layers until only a sheath of iceberg lettuce remained, I might not be able to finish it. Let’s put it this way: if there’s a rat foot in my hamburger, I’d prefer not to taste it.

But I was pleasantly surprised. My burger came carefully swaddled in green, pickles and sauces kept contained by a well folded leaf. What’s more, it actually tasted good. Not good enough that I’m going to give up my salad-eating ways and dive into the murky world of American fast-food eating, but good enough that this first visit to Carl’s Junior is likely not to be my last.

Also worth noting: It’s not on the menu, but In-and-Out offers the same lettuce leaf option. Just ask for your burger “Protein Style.”

I’ll admit it: I have a Splenda habit. I’ve tried Stevia, I’ve experimented with agave, but at the end of the day I always find myself back with my little yellow packets. Sucralose = my diabetic addiction.

When Splenda first came out, I remember raving about it to my roommate Max, a very smart guy who tended to know a lot about a lot of things, and he began teasing me for eating what he called “chlorinated sugar.” I didn’t let this stop me — but I always did wonder about the safety (and ingredients) for all these different sweeteners.

Looks like someone at the San Francisco Chronicle had the same questions, because they just ran a break-down of all the major sweeteners, from straight-up sugar to Splenda. (They also did a “cookie-bakeoff” with the sweeteners.) There’s a lot of useful information. Xylitol, for example, was judged as the best sucrose substitute, but “it shouldn’t be eaten in large amounts. Its side effects are gas, bloating and diarrhea. The good news is that it doesn’t cause tooth decay.”

As for my beloved yellow packets? Splenda is “one of only two sweeteners deemed safe by the Center for Science in the Public Interest.” But, the article notes, “It does enjoy some controversy over the fact that it was discovered during the process of developing an insecticide.”

I’m going to mull that last bit over while drinking a cup of sweetened tea.

First, an update to my previous post, which was supposed to be about anti-CD3 monoclonal antibodies but was rudely interrupted when I dropped my pump in the toilet: this was a bad idea. Despite the fact that the pump had spent approximately .3 of a second dipped into the tank, it decided it had a “button error” and stopped working, leaving me stranded in Yosemite with no pump and a bottle of Lantus that expired in 2007. I got NPH from the emergency clinic (NPH can be sold over the counter — who knew?) and have spent the last two days struggling to keep my blood sugars in a quasi-normal range — not to mention feeling a renewed sense of appreciation for the technology that helps keep me alive.

Right now I’m at my desk, waiting for my replacement to arrive, and am in the need of a pick-me-up — so imagine my delight when I found this article from the (British) Times about Type 2 diabetes and, wait for it, DOLPHINS.

I recently got back from a whale-watching raft trip on which I witnessed a humpback whale breach right next to our boat — and started to cry. I’ll admit, I have a thing for marine mammals. So I’m fascinated by the news that dolphins, bottlenosed, to be exact, are the only known mammals besides humans to naturally develop a form of Type 2 diabetes. To quote:

American scientists have discovered that bottlenosed dolphins show a form of insulin resistance very similar to that seen in human diabetes. Unlike patients with the condition, the marine mammals can turn this state on and off when appropriate, so it is not normally harmful.

The findings indicate that dolphins could provide a valuable animal model for investigating type 2 diabetes, which promises to advance research into new therapies. If researchers can learn how the animals switch off their insulin resistance before it becomes damaging, it could be possible to develop a cure.

This does not mean that we’re going to start killing dolphins so we can check out their pancreases (the researchers probably know that’d be a PR disaster) — instead, they plan to use “studies of their genetic code and physiology, revealed by blood and urine samples, [to] provide important clues to the biology of diabetes.”

Here is some more information:

The unexpected discovery has emerged from a study of more than 1,000 blood samples collected from 52 dolphins. When the animals had fasted overnight, their blood sugar remained high and their blood chemistry changed in ways similar to diabetic patients. Unlike people with diabetes, the dolphins’ blood reverted to normal once they had been fed.

Dr Venn-Watson said that such controlled diabetes might be beneficial to dolphins. Their diet of fish is high in protein and low in sugar, and they often go long periods without eating, yet they have large brains with high energy demands.

By making their bodies resistant to insulin while fasting, they may be able to keep their brains well supplied with sugar. Once they have eaten, the insulin resistance stops to prevent damage to their health.

How could this be beneficial to our treatment of Type 2?

If dolphins indeed have a genetic fasting switch that can turn diabetes on and off, then finding and controlling such a switch could lead to the control of insulin resistance and possibly the cure to type 2 diabetes in humans.

I am now going to insert a photograph of a dolphin.

Tell me that didn’t make you feel better.

I just had a feature published in Popular Science that I think might be of interest to others with Type 1. As I’ve mentioned previously on this blog, right after being diagnosed with Type 1 diabetes 9 years ago, I enrolled in a trial for a new drug called an anti-CD3 monoclonal antibody (best known as teplizumab and being studied in a trial called Protege that is currently recruiting recently diagnosed diabetics to participate). The drug’s goal: to “reprogram” my immune system into not killing off insulin-producing cells, thus prolonging the honeymoon period and likely making  blood sugars easier to control. The result of my experience? I got the drug nearly a decade ago and I’m still making a measurable — if marginal — amount of insulin. I’m by no means cured, but damn, am I grateful to have given the drug a try.

For all my positive experience with the trial, though, I’ll admit that I never got much beyond learning how to pronounce “anti-CD3 monoclonal antibody” (try saying that three times fast). What is it? How do researchers think it might work? What effects might it have on auto-immune diseases beyond just Type 1 diabetes?

I recently got the chance not just to learn about this myself, but to write about it for Popular Science — and the result, a feature called “Rebooting the Body,” is in this month’s (March’s) issue, on newsstands now. Here’s a link to a digital copy (a revised one, which should work) – though please consider picking up a hard copy to support them for running it! I wanted to give a heads-up that it might be of interest not just to people who have been recently diagnosed (if you have, you should definitely look up the ongoing trials) but to anyone with a family history of Type 1: Kevan Herold at Yale is heading a new round of trials to see if the drug might be actually able to *prevent* Type 1 in people who have a high risk of getting it. There are tests available to get a sense of your chances.

And also: as you may already know, one of the main issues in transplanting insulin-producing cells — whether they be from stem cells, pig cells, flowers, or anything else — is figuring out how to prevent the same part of your immune system that caused Type 1 in the first place from killing off those cells again. Anti-CD3 monoclonal antibodies might be a solution to this problem — if you combine a new source of insulin-producing cells with a means to protect them, well, you’re getting yourself closer to a cure.

Anyway, if you have access to a paper copy, check it out — if not, I’ll try to post a digital version here.

On a less inspirational note: this morning, I dropped my pump into the toilet.