Logistics of a cure

The Cure
2006 Publicity Photo

One day, there will be a cure.

I’m about 75% sure of that. (I’m about 40% sure that I got that percentage right).

But it’s not here right now, and I’m 100% sure of that. So please don’t misunderstand and please don’t be misled. There is no way to cure yourself of diabetes.  At least not that anyone knows of.

When someone does finally discover the holy grail — and I mean a finished product, not just an abstract idea — how will it take form, and how will it get deployed to the masses? That’s a challenge in and of itself. In all likeliness, this will need to be figured out even before the press-release goes out, otherwise the poor miracle-worker’s office could resemble a Walmart early in the morning following Thanksgiving.

It’s only diabetes

The big news lately surrounds the announcement over the DRI’s “BioHub” and the social-media teaser that preceded it. You can read my thoughts on that series of events in a comment I left on the DiabetesDad blog. But this post is not directed at the DRI; it’s to the folks who feel they absolutely cannot wait for the true announcement that still seems just out of reach. Give it a read, and I’d love to hear your thoughts on the topic.

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As I surf the various online diabetes-related forums, whether it’s on JDCA’s Facebook page, JDRF’s LinkedIn group, or DiabetesDad’s blog, nothing distresses me more than the comments by forlorn parents and grandparents of children with diabetes. Usually, those comments read like a variation of the following: My beautiful Cameron* was devastated with the diagnosis of Type 1 two long months ago, and we desperately need a cure!! It kills me to watch my child suffer an eternity of painful injections, dietary restrictions, and being socially ostracized.  I mourn the loss of Cameron’s childhood every day!!

These kind of comments make me sick. Not because it’s unfortunate for anybody to be diagnosed with diabetes, but because the parents seem to believe there’s no hope for them to live a happy life. These comments are filled with sorrow and despair, and they suggest that the child is doomed to live a miserable life.  This message is for those parents:

DON’T FEEL HOPELESS! A GOOD LIFE DOESN’T END AT DIAGNOSIS!!

Banking a possible cure: cord blood

Last week, I wrote about one of the things I try to do to protect my children, which is to carry a life insurance policy.  But there’s another precaution my wife and I have taken in case their pancreas decides to play a “like-father-like-son” game.  At their birth, we collected and froze their umbilical cord-blood. Just in case.

Right now, there’s no proof that the stem-cells in the kids’ cord blood can be used to prevent or reverse diabetes in the event it should afflict them (or — fingers crossed — reverse diabetes in their dad!). Nor do we know that diabetes is even in their future at all. But I do know that, because of me, their chances are somewhat elevated. (I’m sorry!!)  That thought sickens me.

Last week, Tom Karlya, VP at Diabetes Research Institute Foundation, father of two children with diabetes, and blogger Diabetes Dad, wrote the following in his blog;

Want to cause a riot in your house, try this.  “Honey I went through the genetics on both sides of our families and it seems our child’s diabetes comes from your side.”

There’s no need to do the research in my family. If the kids get diabetes, the guilty-party would be clear. It’s me. I know that I’m the reason for their elevated risk. So in addition to worrying, looking for signs, and occasionally testing their blood sugar in their sleep, I’ve done something to try to protect them.

But the state of current research strongly suggests that, in the very near future, cord blood could reverse the underlying cause of diabetes.  (Where have we heard that one before??)

Again, this is all speculation and nobody knows for sure. At this time, JDRF does not encourage parents to bank cord blood and worries that the companies that do collect it may play on the fears of parents. They also suggest that the “thing” that makes a child susceptible to diabetes is already present in the cord-blood, so it might not help anyway.  Makes sense to me.  Understandably, there are lots of vague terms and expectations, which is why they suggest donating cord blood for research to reach more solid conclusions.

Still, my wife and I did it – we found a company who stores cord blood at an acceptable cost (there is a big disparity between companies). While we used the same company for both kids, we store their blood at different locations in different states, just in case something happens to one location.

Of course, when they say cord blood is filled with “potential”, that potential is to treat lots of other diseases, not just diabetes.  But it’s still “potential”, meaning it can’t do anything yet.

So I’m curious. For parents (or parents-to-be) with diabetes, did you (or are you) banking your child’s cord blood, and if so, are you keeping it for yourself or donating it? What are your expectations?

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Both of my kids’ blood has been stored with AlphaCord. They are smaller and lesser-known than some of the other companies, but we’ve been quite happy with them. The only difference between them and some of the others is that someone (usually the father) has to bring the sealed and boxed collection-kit to a FedEx location to have it shipped to a lab. Many other companies have a courier pick it up at the hospital.

I received no compensation or encouragement to write this blog post. However, AlphaCord does offer a “refer-a-friend bonus”. If you are considering banking your newborn’s blood with AlphaCord and are feeling particularly generous, please contact me privately and I can submit your information through the formal referral process. If you have any other questions about the process, I’d be glad to help out as well. Thank you!

Imagine a world without diabetes

I made a pretty bold statement last Monday.  I said:

Maybe they’ll develop a diabetes vaccine someday… Any parent with diabetes or parent of a child with diabetes will tell you that they, themselves, would rather have the malfunctioning pancreas than their kids.

If I put words in anyone’s mouth, I apologize. If it appears that I said that I’d rather see a vaccine than a cure, well, then maybe I did. My words were pretty ambiguous on the matter, and today my thoughts on the whole vaccine-or-cure debate still are a little hazy. For the sake of people living with diabetes today, I’d love for them us to be cured. For the sake of annihilating the disease for future generations, I’d love to see a vaccine.

100,000 drops of blood

I’ve got a strange feeling that I’ve been here before.

Yesterday on Diabetes Daily, Ginger Vieira calculated how many finger-pricks she had subjected herself to.  Her estimate: 27,375.

Naturally, I did the same estimate for myself.  Of course, the math is far from perfect, as I started out without hardly any blood tests at all in the first year following diagnosis, and now I’m generally averaging 12 or so per day, but since we’re estimating, I believe what you are about to read is perfectly valid.