** 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
Alexis says:February 3, 2011 at 5:03 pm
Youre 100% correct sir. We must be prepared for what lies ahead. We know nothing of a cure but D is here. So lets arm ourselves the best we can!
I am honored to have role models like you here for Justice.
February 4, 2011 at 11:34 am
Thanks Lexi, I’m glad to be here…Reply
k2 says:February 3, 2011 at 6:42 pm
Beautiful Post – Thank you so much for sharing!
February 4, 2011 at 11:37 am
Hugs back, amiga!Reply
Jess says:February 3, 2011 at 8:43 pm
Yes. I’m with you, 100%. Thanks for writing this!Reply
February 4, 2011 at 11:38 am
Scott S says:February 3, 2011 at 9:29 pm
I actually wrote about some of the challenges facing Jeff Brewer as the new CEO (see http://goo.gl/fadb3 for that post). I see it as a delicate balance the organization must face, and while the justification for doing this makes sense, they still need to be careful in managing the PR about the shift in focus, with attention paid to noting it is to make sure long-time type 1s can stay healthy enough benefit from a cure when it is actually found.Reply
February 4, 2011 at 11:39 am
I remember reading that post last summer, Scott. Would it be too much to say that we “live in interesting times”?Reply
AmyT says:February 3, 2011 at 9:47 pm
I love this statement (also so me!):
“As a parent and as a diabetic, I will willingly go to my grave a diabetic if we can prevent any more children, or adults, from being affected by this horrible condition and everything that goes with it.”
Thanks for being another great voice of reason.Reply
February 4, 2011 at 11:40 am
Thanks Amy, I think most, if not all, of us feel that way.Reply
Hallie says:February 3, 2011 at 9:58 pm
I, also, agree with you 100%! I’d do anything to take this disease from my child. But I also don’t want one more person to go thru the pain we have in the past almost 2 years. I had no problems with the diatribe interview. None. I, too, applaud the new direction Great post!Reply
February 4, 2011 at 11:40 am
Crystal says:February 3, 2011 at 11:53 pm
February 4, 2011 at 11:43 am
Sarah says:February 4, 2011 at 8:00 am
When I read the whole letter and the part about reaching out to the T1′s, I immediately thought of you because of how much you have been pushing for this very movement.
Your post, along with K2′s and LeeAnn’s, are the best ones I’ve read. They all “hit the nail on the head” and they make me even more proud to call you guys my friends.Reply
February 4, 2011 at 11:52 am
Thanks Sarah, I really appreciate that.
There was already a bit of activity going on inside the JDRF, but it just hadn’t been communicated very well until now.Reply
Lee Ann Thill says:February 4, 2011 at 9:58 am
Your word was resolve, but I’d like to add, wisdom. And while I loves me some snark, I think I’m snarked out this week.
What I’d most like to see emerge from all of this is doctors and anyone else who has discussions with newly diagnosed families about the cure, having much more realistic discussions with them. I felt burned that the cure didn’t come when I was told it would, and I know lots of other long-time T1′s had similar experiences. It pains me to see these families so invested in something that may or may not ever come to them. My heart breaks thinking about those kids having similar revelations that everything they were told about being cured isn’t going to happen. It’s so past time for families to have more realistic expectations about it because the damage from getting those hopes crushed amounts to just another diabetes complication in my eyes, one that can be avoided.Reply
February 4, 2011 at 11:59 am
I agree Lee Ann. Sometimes I wonder if young children don’t go thru the 5-stages of grief twice after diagnosis. Once at the initial diagnosis will the testing, injections, carb counting, etc..
And then again once they are mature enough to understand that the diabetes is a life-long condition and what that really means.
Kristin says:February 4, 2011 at 12:43 pm
YES. Exactly. Thank you.Reply
Beth says:February 4, 2011 at 7:11 pm
I think that we were fortunate five years ago, at my daughter’s dx (if you can be fortunate in that situation) that her endo told us, “Well, they’ve been promising a cure in 5 or 10 years for about 25 years now…so draw your own conclusions”. Diagnosis is definitely the most helpless I have ever felt as a parent; it’s overwhelming and frustrating that we can’t just “fix” it or follow a book of rules and make it all better. (The best lesson I’ve learned so far is that diabetes plays by its own set of rules and they change all the damned time.) We’ve always *hoped* for a cure but worked to make TODAY and TOMORROW better. I want her to get to that cure in as perfect a condition as she can!
As a parent of a teen, I’m excited to see JDRF and CWD reaching out to adult Type 1s and including them in the future of their organizations. Just as I have learned enormously from parents who have been there before me, my daughter will be able to learn from the experiences of adults who have “been there, done that”.Reply
Cherise says:February 5, 2011 at 8:03 am
Well written. I agree with you from the top of your post to the bottom.Reply