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Happy Diabetes Day!

Halloween is a strange holiday for me. It's ten years ago today that I walked into Sparrow Hospital so that I could be officially diagnosed with type 1 diabetes and begin treatment. Can I just say how ironic it was to see Halloween candy dishes brimming over with goodies on every reception desk in the hospital while I was going in for my diabetes diagnosis?

We already knew I had the disease. I was in my second year of grad school, and for months I had been ... unwell. I was thirsty all the time. My mood had gotten distinctly Hulkish, to the point where I was ready to smash my roommate when he dared to leave unwashed dishes in the sink. (I know I lost it with at least one of my students, too.) Probably the most telling symptom was that I was peeing all the time. All of this together painted a familiar picture.

See, my father is also diabetic. He was diagnosted diagnosed at age 24, when he was in the middle of grad school. So there I was, 24 years old and in the middle of grad school. I drove home, went out for dinner with my parents (this was last time I drank real Cherry Coke), came home, and tested my blood sugar on dad's meter.

The meter errored out because it wouldn't read that high. (Normal fasting glucose shouldn't go higher than 126. The meter goes up to 600.)

Quick tutorial -- type 1 diabetes means my pancreas no longer produces insulin. Insulin is used to break down the glucose in your blood and use it for fuel. Without insulin, two things happen. The glucose remains in your blood, pushing that number higher and causing some long-term damage. Also, your body isn't getting glucose for fuel, so it starts to break down fat and muscle, which has some toxic side effects. (You're thirsty in part because your body is trying to flush the toxins, which is also part of the reason you end up peeing all the time.) By the time of my diagnosis, I had dropped about 20-30 pounds. I think I weighed 130 or so. (I'm about 5'7".)


I wasn't happy about having the disease, but having watched my father deal with diabetes, it wasn't as scary as it might have been. Heck, being diagnosed in 1998 meant I had an advantage. When my father started out, there were no glucose meters, no insulin pumps, no quick-acting insulins. You tested your blood sugar with a urine test strip, then matched the color of the strip to determine a rough approximation of what your glucose was hours before. These days it's a 5-second blood test. (But hey, we both have it better than the early days, back when you had to boil your own glass syringes, sharpen the needle, and use cotton to make sure there were no burrs on the steel.)

I started out on injections, and one of the first things I noticed was how much better I felt. The past few months had been a gradual decline, and you don't notice just how bad you're feeling until you're suddenly healthy again.

I'm a control freak, so I set out to beat this thing into submission. I made some dietary changes. Switching to diet pop was the most obvious. I also checked my blood sugar at least 4-5 times a day, and took probably 3-4 injections per day. I started exercising more. As a point of pride (or stubbornness), I experimented until I figured out the exact insulin dosage for a hot fudge sundae. (3 units Humalog mixed with 1 unit NPH, though that's changed over time.)

In so many ways, I've been very fortunate. We have tools to control the disease, and I've had health coverage that allows me to actually get those tools. I've also seen the effects of diabetes, so I knew to take it seriously. My father occasionally needed Mom to shove candy or OJ into his mouth to get his sugar back up. I used to play racketball with him and some of his friends, including one man who lost the lower part of his leg to the disease. My mother donated a kidney to a family friend whose diabetes had destroyed hers. I'm not perfect by any stretch. I need to make time to exercise more, and my diet has gotten less healthy than it might be, but I know better than to ever ignore the diabetes.

I remember dad once saying it was strange to know what it was that would kill him. I've thought the same, but I don't think I agree anymore. He's been diabetic over 30 years, with very few long-term effects. I've had it 10, with (so far) no detectable long-term damage. And the tools to control it keep getting better. I'm on an insulin pump now, and within 10 years I suspect I'll have a continuous glucose monitor checking my sugar every few seconds as opposed to testing 6-7 times/day, which is what I do now. I've started taking a cholesterol pill to keep that under control, but so far it seems to be working. A cure would be nice, but the tools to manage diabetes are pretty darn good, and I believe I can keep this under control long enough for something else to kill me :-)

For the first few years, I'd go out on Halloween and have a "real meal" in defiance of the disease. Real pop, ice cream, all that good stuff. I'd also test much more frequently, and take a lot more insulin that night. I don't do that any more. I don't think about it that much. It's just there.

More than anything, it's an annoyance. The body doesn't follow logical rules. I can eat the exact same meal two days in a row, taking the exact dosage of insulin. One day my blood sugar will be 120. The next it will be 200. Same food, same insulin, totally different result. That's obnoxious. I have to get regular bloodwork and visit the endocrinologist more often than I'd like. (I also had to work to find an endocrinologist who wasn't an asshole, which took a few years.) I've got good insurance, but the copays still add up over time.

Changing out the insulin pump every two days isn't exactly fun either. There are a few places where I've built up scar tissue in the fat layer, so the insulin doesn't absorb as well. And then there are the days when you insert the catheter and hit a nerve or blood vessel. My son likes to watch me change out my set and play with the old plastic vial, so I can't say the words I want to say when I hit those nerves.

Side note -- my son also insists on making me check his blood too, which I pretend to do. It's a fun little game. (My daughter is too old for such games, I'm afraid.)

Anyway, there's no Message here. No point I'm trying to get across. It's just strange to look back and realize I've been living with this for ten years. Considering diabetes was a death sentence a century ago, I consider myself to be pretty fortunate. And if you've gone to one of my panels and wondered what I was doing when I prick my finger and mess with that weird device in the black case, now you know.

I'm pretty open about the disease, so if anyone's curious or has questions, please don't hesitate to ask.

Comments

ellameena
Oct. 31st, 2008 08:55 pm (UTC)
Actually, there's a lot of stuff that could cure you a lot sooner than ten years.
gregvaneekhout
Oct. 31st, 2008 08:58 pm (UTC)
Beta cell regeneration? What else?
ellameena
Oct. 31st, 2008 09:12 pm (UTC)
Hm, let's see. I'm not sure what you mean by beta cell regeneration, but, yes, the cells can be regenerated. As I posted below, there is growing consensus that type I diabetes is an autoimmune disorder, and so probably is exactly the same disease as other autoimmune diseases such as rheumatoid arthritis. It's just that in your case, the pancreas was the target. So any breakthrough in understanding the mechanism of the autoimmune disease and curing it could result in a cure for diabetes. If you stop the immune attack, the pancreas will regenerate itself with no medical intervention.

Other options (without doing a lot of internet research for which I am not getting paid :-) would be small molecule pharmaceutical therapy, for which a breakthrough could come any time (a number of pharma companies have very active diabetes pipelines*); gene therapy, which is later stage than any transplant based on embryonic stem cells; and a replacement pancreas grown from other types of cells. There have been a bunch of successes lately in growing replacement organs using progenitor cells, which are sort of like partially differentiated stem cells. It's looking more and more like the thing that makes stem cells so attractive--total pluripotential--may actually make them more difficult to work with. Sort of like sending an infant on an interview for a chemical engineering job. Sure, the infant has the potential to become any kind of worker, but most employers would like them to be a little further along in their education, and really have no place for an infant in the workforce. A lot of the excitement around embryonic stem cells was based on the theory that you could just grow up a batch of them, inject them with a needle, and let them do their thing. Turns out, they don't really know what to do when you get them in there. So there is no shortcut around finding out exactly how the cells differentiate.

In short, please don't hang all your hopes on embryonic stem cells. There are many countries with absolutely no limitations on stem cell research, and the research has been limping and stuttering along in those countries as well. It's very early stage, and has not lived up to the hype. More's the pity that ESC research is the only biotechnology most people have heard of. The industry is absolutely exploding right now. It's hard to convey how rapidly things are changing, how rapidly discoveries are being made.

*There is more focus in the pharma industry on type II diabetes, metabolic disorder, and obesity, for which it is believed that there may be way to make a blockbuster drug to deal with the whole shebang. I am less aware of type I diabetes research, and would have to do some homework to discuss that more definitively.
gregvaneekhout
Oct. 31st, 2008 09:20 pm (UTC)
There are certainly several promising lines of research that could lead to a cure. I believe -- and I'm not a scientist, so I'm appending my belief to the beliefs of people who are scientists engaged in stem cell research -- that embryonic stem cell research is among the front-runners, so I'm in favor of embryonic stem cell research. If they can get programmed stem cells to behave like embryonic stem cells and not exhibit a propensity to turn cancerous, I'll be thrilled.

But I'll pretty much take any cure I can get, and I hope coming at the problem from all angles leads to a faster cure.
ellameena
Oct. 31st, 2008 09:33 pm (UTC)
I have been a scientist and I write about biotechnology for a living. I have talked to the people doing this research, and all of the other kinds I've mentioned. It's my bread and butter. Embryonic stem cells are not the frontrunner in curing cancer, diabetes, parkinson's or any other diseases commonly associated with them because they are very early stage. The FDA staging on drugs and biologics is:

Stage 0: Animal trials
Stage 1: Human trials for toxicity
Stage 2: Human trials, efficacy, small scale
Stage 3: Human trials, efficacy, large scale
Approval
Post-market monitoring

Embryonic stem cells have never made it past stage 0. There are other treatments for diabetes and other common diseases that are often associated with ESC that are in Stage 1, Stage 2, or maybe Stage 3 right now that are considered far more likely candidates that embryonic stem cell treatments. It's possible that an embryonic stem cell therapy could make an end run around some of these therapies and make it to market before them, but you have to understand that the whole process from discovery to market is generally well over ten years. A lot of so-called "cures" get hyped in the media at the animal stage, but it's meaningless, because the vast majority of such "cures" fail at some point in the clinical trial pathway. Most publications geared toward a scientific audience don't acknowledge anything less than a stage II clinical trial as a potential cure. As they say, we can't cure cancer yet, unless you're a mouse, then we can help you. Embryonic stem cell research is something that hasn't even succeeded at the animal stage. So, no, it's not a frontrunner. It's very interesting research, but it's still early-stage. I hope this helps.
gregvaneekhout
Oct. 31st, 2008 09:41 pm (UTC)
Again, I'm not a scientist and you are, so I certainly respect your views on the matter, and clearly my use of the term "front-runner" was a layman's error. I do, however, also respect the views of scientists who feel embryonic stem cell research is the most promising route to a cure. So, if I'm wrong to put to much hope in embryonic stem cell research, I'll continue to hope that it receives political and financial support such that its promise can be fully explored.

And, Jim? I know this is a hot-button topic, and I'm the one who brought it up in a non-hot-button post. Sorry about that.

jimhines
Oct. 31st, 2008 09:51 pm (UTC)
No sweat. You're both civilized people, and nobody's flinging knives back and forth yet. Carry on :-)
ellameena
Oct. 31st, 2008 10:01 pm (UTC)
Can you point me to a scientist who has stated that embryonic stem cell research is a "frontrunner" in the race to a cure for *any* disease? I think you'll find that they will say that it's very promising or that it has a lot of potential, and your belief that it is a frontrunner or the best hope is perhaps an interpretation by you or other members of the lay public. Again, I have interviewed these guys--actual scientists doing the research, and I know they would never frame their work in that way, although they very passionately believe that it has a great deal of promise. I think it's safe and very valid to say that some important things could come out of embryonic stem cell research, but there's really a lot going on out there. Within that ten year time frame you cited, everything is going to change. I think you have every right to want to support stem cell research, but would also hope you would see it as good news that as excited as everyone is about stem cells, there is even nearer term stuff in the works. That IS good, right? Right? I am not here to take away your hope, but to give you more.
gregvaneekhout
Oct. 31st, 2008 10:20 pm (UTC)
Well, there's Robert Lanza. But, look, I'm willing to admit I might be wrong in putting embryonic stem cells at the top of the list of hopefuls. My main point, which I've been stumbling toward, and which your comments are helping me consider, is that embryonic stem cell research shouldn't be restricted for reasons that have nothing to do with science. I appreciate you pointing out several other avenues of research. If they lead to a cure before embryonic stem cells, I will be happier than I can express.
ellameena
Nov. 1st, 2008 01:10 am (UTC)
I didn't mean to tell you that you were "wrong." Sometimes the internet makes things seem more argumentative than they are. I think there are some serious ethical issues involved in embryonic stem cell research, and that such things should be approached, if at all, with the utmost respect. I'm afraid that the early stage of research of embryonic stem cells has become a political argument against their development, and that is incorrect. No area of science should be abandoned simply because it is early stage. If there are ethical arguments to be made, they should be tackled head on, not denigrating the value of the science, which is not what I was trying to do. On the other hand, I hate to see people feeling as if their ONLY hope of a cure is being held up by politics.

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