** This post and the comments look unusual because I managed to nuke my blog and had to recover these posts from the google cache, this was the only way that I could find to also preserve the great comments.
After reading some really great posts today by Allison, Lee Ann, and especially by Kelly (among others), I decided that I wanted to post my takes on new directions for the JDRF as described in Diatribe’s Interview with JDRF President Jeffery Brewer.
As a parent myself, I can understand why parents could be concerned. My own son had health issues when he was young and it went on for several years. And just like any other parent, I would have done anything to have taken that illness from him and into myself instead. I felt guilty that I couldn’t. Helpless because I couldn’t. The most dangerous place in the world was between my son and what he needed. And still is.
I believe the JDRF is still committed to the cure, but are taking an honest look at the real world. The cure is nowhere to be seen, unlike the over 400 cures for diabetic mice.
As a parent and as a diabetic, I will willingly go to my grave a diabetic if we can prevent one more child, or adult, from being affected by this horrible, life-long condition and everything that goes with it.
I believe that prevention is a very important goal. I’m not a doctor, but it seems to me that stopping the auto-immune response will be the first part of the cure. Beta cell regeneration has been seen, again in mice, but we have no idea if blocking the destructive T-cells could produce a similar effect in humans. What if the “prevention” became the cure for all of us already out here?
As a diabetic with 41 years of isolation, fear, guilt and depression under my belt; I will also go happily to my grave knowing that diabetics could find the type of support that is needed to manage a life long condition that never sleeps, rests, or even looks the other way. Without that type of support it is so hard to to truly live; sometimes all we can do is exist.
That is why I am hopeful for the JDRF outreach efforts to the adult T1 community. Not only can they help people connect with others for support, but the adult community has thousands of years of combined experience. If someone is having issues at a certain phase in their life; not only are there people going thru the exact same thing but also people who have been thru it already.
The DOC supports each other in this way and the JDRF can help people outside the DOC connect with each other either online or locally; even in places where there isn’t a local branch. There are 85 branches in the US but diabetes doesn’t care if we have one close by or not.
The Artificial Pancreas Project? The sooner control can be established, the less damage will be done to the body. With the cure nowhere to be found, we do need better tools to help us us all survive until it is found. We all have to realize that it’s not going to be a silver bullet. We will still have to test and monitor this machine to make sure it is functioning properly. Yes, I do believe there will be a cure. I’m just not banking on it until I can get my hands on it.
As one of the “forgotten diabetics”, I have to applaud this new direction and I hope that when the dust settles everyone realizes that the Adult T1 community has no intention of putting themselves into that most dangerous place in the world. And I seriously doubt that the JDRF wants to be there either.
No snarky comment today, just a word: Resolve
© 2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com
Kristin says:
Beth says:
