Discussion in 'General Discussion' started by Ellen, Apr 4, 2013.
Thought you may enjoy following this
It sounds like she's finding it very freeing, even in just her first day! That's amazing. I really hope this pans out, it sounds very promising!
Ellen thank you for posting. I will follow. I would love to do a closed loop study.
Not sure if anyone else is still following this but there are more posts up through the end of the trial and the transition back to real life.
I'll be honest and say I am crying right now having read all the posts. I can't even imagine the freedom of having at least a tiny bit of the day to day responsibility taken away from me. It would be incredible to go for a run and know glucagon would be administered if I went low.
I know we are many many years away from having this technology available to us but this does give me a lot of hope :cwds:
My daughter read the article and told me later that it made her mad. It's not a cure; it's lots of sites.
My thought was that knowing MDI well will be even more important than now. With the pump, there's the common management aspect, but when the bionic pancreas fails, it would be a harder switch to MDI until a new one arrives if you don't already know basal rates, etc. And we all know that technology does and will fail, as will the sites and sensors.
To me, it looks good, but I'm also with my daughter, it's not a cure.
This is what I see also for my daughter. No it's not a cure but anything that can improve her stress, self-esteem, care etc is a step in the right direction. We don't know when a cure will ever come but you as well as others deserve to have this.
Oh, I totally agree with you that it isn't a cure.
At least speaking just for myself I have little to no hope that there will be a cure in my lifetime for people like myself (living without a pancreas).
But I am personally at the point that anything to reduce the day to day burden would be wonderful. I would even take something at this point that required the same amount or even more work if it could reduce the highs and lows.
I have to agree with Meg, after dealing with this 24/7 for over forty years lots of stuff about T1 is a real pain but the always having to be aware and thinking about it at the moment and thinking ahead and planning for what I might be doing an hour or more from now is draining, takes away your ability to focus as much on the present etc. Also if you could reduce to almost zero the number of lows the savings in time would be fantastic. The number of hours over forty years that I have spent dealing with lows, checking, eating, waiting to come back into range is crazy. The multiple sites for us who wear a CGMS and Pump seems minimal, not ideal but to me really worth it. As Meg said the joy to be able to just go outside and take a run or hike would be fantastic, to really be able to sleep through the night, etc. etc. I do not think switching back to shots or a pump and doing it yourself would be any big deal. A bit of a hassle but probably nothing you would have to do for more than a few days. I do not think it would be too difficult to figure out long lasting insulin needs and bolus needs that will get you by for a few days. I would love a cure too, but I will take anything that helps me now.:cwds::cwds:ali
I had my son look at it and his reaction was similar (well, totally minus the crying. ). The thought of being able to just forget about it...that's powerful.
Right there with you.
To be free of that for a day...that would be a big deal.
everyone should feel free to ask Anna any questions over on Glu. She's very open to talking about the whole process. Anna was our local ADA youth person for a number of years and we were truly blessed to be able to work with her for so long and now with her work at Glu she's got an even bigger voice. She's just an all around good egg and I'm happy to call her a friend.
These results are simply amazing. The team at Boston University and Massachusetts General Hospital are bringing something new to type 1 diabetes -- the absense of fear. I think this is an amazing accomplishment.
You can learn more about this project at Emma's Dream: http://www.emmasdream.com/
You can also make a contribution to help the research along if you wish.
Would a stem cell transplant work for you? I know nothing, but I would think you'd be at an advantage for success with not having the autoimmune issue to overcome?
Sorry, I don't completely understand the question. Do you mean transplanting stem cells that actually produce insulin? Or an actual stem cell transplant in order to "replace" my immune system. Most of the stem cell transplant trials (for newly dx type 1) that are going on right now are to reverse the autoimmune attack from what I understand.
Control that tight is amazing. I have no idea how the swings in blood sugar my DS experiences make him feel but I know much of the time he really does not feel well. This would be a huge step forward to better management if approved.
Replacing the beta cells. Didn't one of the studies show significant growth of beta cells even in those without c-peptide function? Zao? But, do they copy cells in the pancreas which would be problematic? I was just thinking that since your diabetes wasn't caused by an immune system attack, such a procedure might work better for you than for a traditional T1. I'm just wondering...Wish there was a cure for y'all.
I am pretty sure Zhao is working on using stem cells to reverse the autoimmune attack. From what I understand he has gotten pretty great results even in people without any measurable c-peptide. But he is stimulating their own islet cells to produce insulin. There may be other people working on actually generating beta cells but from what I understand no one is close to human trials on that.
Here is a basic description of Zhao's trials. It sounds really hopeful those with type 1:
Description of trial:
I am fine if there is no cure in my lifetime but some technology to make things easier would be nice...
Of course this is all stuff to talk to your Docs about but I too would think that not having the autoimmune attack part of T1 would help with any transplant issues. You do need to have the anti rejection drugs for cells introduced but you might get around some of the other autoimmune issues that arise. The anti rejection drugs are a big deal so depending on your health the Docs might or might not suggest some of these options. You are really unique, your issues are both the same but also different from a "traditional" T1, sorry you are going through this. Can you connect with anyone else who is in a comparable position as you? You have a lot on your plate. Best to you.:cwds::cwds::cwds:ali
I'll send you a message to avoid clogging up this thread!
I know a lady who participated twice in the trial runs of the Bionic/Artificial Pancreas in Boston. She had two lows the first time that were not handled properly by the device, so they called her back for another run. I'm not sure how that one turned out.
I volunteered to participate, but never got a reply. I also volunteered for Dr Faustman's project, and did not get a reply there either. Is it because I am in my 70's now, and have had type 1 so long???
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