Late last night or sometime this morning (I only saw it this morning), the story broke. The Diabetes Research Institute announced that they were pursuing the concept of a "mini-organ" that they were calling the BioHub.
I have read a bit about it. I have heard people complain that other groups are already investigating this idea. Others asked, until we find the underlying cause, how can we "cure" anyone? Finally there are those who say that another 5-10 years is the same line that they were told at diagnosis 5 years ago.
I respect all of these opinions. Personally, I am becoming more optimistic that a cure or something that will see my son live a life without testing and injecting may well happen in his lifetime. That is something that I would not have said five years ago.
This month marks 13 years that we have lived with diabetes. We were never promised a cure. We were promised a better life. I believe that we have seen that in a lot of respects.
When my son was first diagnosed, we had a meter that took 30+ seconds to count down and required me to cover his small finger completely with blood to have enough for a reading. The process was painful on many levels. When we were first given a Freestyle Mini meter, I thought we had died and gone to Heaven. The glucometer used very little blood and gave me a reading in five seconds! I would instantly know if my child was high or low. I was so excited!
Today we have all sorts of meters that don't just read quickly or use a small sample size--they now show us trends, send readings to phones and other devices. They can be downloaded without all of the cords and such we once had to order. Even pen and paper people like me are finding it easier to upload a meter and see what it has to say.
Insulins have also changed. We no longer are reliant on NPH or regular insulin that require specific schedules and meal planning. My son was lucky in that we started out on the relatively new "humalog" and I learned how to be more flexible with it and our NPH. Today we have three rapid acting insulin choices as well as a variety of long lasting "peak-less" insulins.
Insulin pumps have become "smarter" and now "talk" to Continuous Glucose Monitors. When I first heard of a CGM, it was a blinded device that was cumbersome and only available through your doctor. You wore it with no idea if it was actually working or what it had to say. The machine had to be returned to your diabetes clinic to be reviewed and interpreted. 13 years later, CGMs are commonly used devices that work in conjunction with some pumps. I have no idea if we will have a cure in 5-10 years. My best guess is that the Hub will change. The artificial pancreas projects will be altered but we will see something amazing. We have seen amazing changes already. 100 years ago, my son would not be living with diabetes it would have killed him. 50 years ago he would not have been using home blood glucose and ketone meters. 20 years ago he would not have been carrying around a tiny insulin pump to keep him alive. 20 years from now that pump may be sitting on his fireplace in a glass case with a sign that says "Remember when..."
Today there is more hope than we have had in previous years. We are making progress. Slow and steady, I finally believe that we will win the race.
Barb, I'm with you all the way on this perspective. It's only been nine years since I heard Camillo Ricordi talk about islet cell transplantation at a CWD conference. And here we are looking at possible clinical trials as early as 2014. It feels good to have my hopes lifted again.
ReplyDeleteI would love to see my son's islet transplant done with his own cells. I know that reprogramming work is also progressing. It makes me feel that I will live to see him free of exogenous insulin. Wow! That feels good.
By the way, after 15 years of dealing with diabetes, I smiled at your delight about a 5 second test. Our first meter took 45 seconds and a "hanging" drop of blood. Our first long acting insulin was NPH, which we said stood for "Not Particularly Helpful." Things are better now, and I'm confident we'll see them get better still.
Thanks Barb, great to hear your thoughts. Us parents are a cynical lot. I find the Biohub interesting although I don't quite understand how the antirejection drugs are contained and how that would work. I didn't let my hopes get raised too high nor did Danika but we still find it an interesting alternative and maybe something that will happen sooner rather than later. The real "reversal" cure that we're hopeing for seems to need to0 many clinical trials and years to benifit our kids soon.
ReplyDeleteWe were so excited when we got the VerioIQ meter because of its headlight. "We thought we had died and gone to heaven!" <---Such a good point. Every advance deserves a celebration!
ReplyDeleteLovely! While i hated the hype, I love the brilliant ideas. And I tell newer d-parents all the time: if you think nothing has changed, spend a few months iwth a small child on Regular and NPH. So glad to have those dark days behind us.
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