Discussion in 'General Discussion' started by Gomod71, Jun 7, 2011.
To me this isn't a cure because you still need to take immunosuppressant drugs for the rest of your life, which have a whole host of risks and complications.
I also thought it was funny how the author of the article said that the person's diabetes was most likely caused by a virus. And they know this how??
Thanks for posting this Jen. Ive been following the DRI's work and Dr Ricordi for some time now. Thankfully they dont have the severe issues with transplant rejection that they do with the complete pancreatic transplant. I like this sentence from the article:
"Currently approved for the most severe cases, the transplant procedure has a 70 percent success rate after seven years, said Ricordi, who defines success as being insulin free and experiencing no transplant rejection"
Another thing to keep an eye on and give us hope. It helps me to know that there are scientists all over the world doing valuable research on type 1
I think in the dubious "most likely trigger" category a lot of people put coxsackievirus at the top because they have identified a particular reason why the virus might trigger an errant autoimmune reaction -- I don't think any other potential trigger has had an explanation attached to it? But I may not have heard of something that's common knowledge to everyone else. Plus the virus is so common and spreads so widely now and often passes through without discernible symptoms, so it's top of my list, too. "Most likely", of course, has very limited application. . .
I really like it when folks post about these alternative ways of treating diabetes because frankly when I first came to the subject I had no idea that they were actually actively transplanting islets or pancreases. It's good to see what's out there. It's good to be able to discern between real scientific options with risks and benefits and the snake oil out there. It helps me understand all of it better.
I do always wonder, though, when I read about the folks who get transplants because their diabetes is so "extreme", what's up with that. I know YDMV, and I am willing to believe there are some people that are so sensitive to insulin it makes management almost impossible. I know there are folks who have insulin allergies and other secondary issues. But sometimes I hope every effort has been made to help these people live on insulin therapy before they jump to a life of immunosuppression. I have known folks on suppression drugs and the tradeoffs really can be enormous, little infections that I wouldn't even notice can turn into weeks of disrupted life. I hope all's going well for the folks who step forward to try this out for the rest of us.
When my then 21 yr old sister was dx back in the mid 80's, that's what the doctors said then... she was one of 4 young people in the ER just dx with T1D - they said they thought a virus was going around that was attacking the pancreas Who knows, no one knows for sure the "cause" or the "why". (Before my sister, there was not a one T1D or T2D (still none) in our family history. )
Yes, I do understand that line of thinking. I guess my feeling is that since no one REALLY knows what causes diabetes, it is all just speculation. So when someone writes something in a publication that a lot of people will read, and they say diabetes is probably caused by a virus, I feel like they are spreading disinformation and I also think people can misinterpret those words and come to very wrong, harmful conclusions. Just my two cents.
Yup, I agree with that.
Islet transplants have been around for some time - I met a woman who had hers done in Edmonton ( see Edmonton protocol) - after a few years, she was placed on Lantus but did not have to take any short acting insulin. She felt that the immunosuppresant drugs and their effects were a necessary compromise so that she could have some quality of life. Previous to the transplant, she was housebound as she had such severe BG swings and was hypo unaware.
I would much prefer to think that a cold virus triggered Steven's diabtes instead of the fact that he had cows milk protein in the first year of life Alot less guilt provoking IMHO
I do believe it's a virus.. The same month dd was dx, a few other girls in her small school were also dx.
And she had just fought off a nasty virus.
Or.. she had gotten her last MMR shot about six months earlier, so it could be from the also.. or a mixture, who know
Or that he ate to much meat
That's really interesting.
We had two kids from our former playgroup that also had Type 1. The first had it for a year or more before we were diagnosed and the second was diagnosed about a year after us.
I do think that coincidence happens, but I wonder if anyone has any information on what they are doing with studying these clusters, and if anything has come of it. I know one mom on this board has, like, 10 kids in her immediate neighborhood with Type 1.
Yea Lisa... It was the "talk of the town"..
From what I hear (we have since moved) parents were freaking that it was contagious. (yea, they actually thought it was contagious! uggh!)
I did call the CDC and talked to a zillion people there, telling them about the cluster
Finally, I got through to someone and they didn't consider three kids being dx in the same school in the same month "a cluster".. No investigation, or anything.
But, they don't consider the kids in Boston who all live within a few miles, and there are SO many that have it, a cluster either.
I really think they should listen to parents more and investigate when so many kids in the same school, area, get dx... There has to be something going on.
Gosh, I know with probability sometimes this sort of thing is just going to happen in a country of 270 million people. But I think if I had three kids in one elementary school diagnosed in a month even I would start feeling like there might be a contagion factor!
Oh, to make it more juicy , an aide and a teacher supposedly got type one, not that month, but not to far apart. The other talk was a high school kid who got it, and. Few months later , the girl who sat next to her in one of the classes got dx. I talked to the mom on the phone, and she basically shrugged cluster theory.
Dan Hurley has posted in here before and has written a book called "Diabetes rising" This is a fascinating book about the rising rates of type 1 diabetes. It starts out discussing clusters, especially some of the ones in the state of Massachusetts, many of them are in the suburbs of Boston.
It does but if I recall correctly nothing ever came from investigating clusters. Randomness does not preclude clusters and some are sure to happen by coincidence - perhaps all. It's human nature to put a heavy emphasis on correlation, proximity (time and location) and clusters but not necessarily scientifically significant.
Personally, as of late, I have been very doubtful of a single environmental trigger. I do think that something kicks the immune system on but I also think it could be one or more of dozens of possibilities - which might as well be nothing at all for all practical purposes.
I wonder if the same thought and emphasis on the "trigger" is shared with those with rheumatoid arthritis.
VERY good point.
Also, a question for the "cluster people"....if you have a cluster and are attributing it to something in the near vicinity, what about all the kids on the next block? Why didn't they get Type 1?
And.....this is exactly my point.
"Mabel, did you hear that little Sally got diabetes, and she just had a nasty virus!"
"Yes I did hear that but guess what, little Jenny down the block was also just diagnosed with diabetes and SHE was just sick with a cold too!!"
"Oh no, do you think OUR kids might catch it?"
"Good lord, we better not let them play with little Betty, she has had Type 1 for a year now, but I bet she still has the virus for it!!"
"You are right!! I just read an article about a woman and they said she probably got it from a virus!"
The same reason that people who live in cancer clusters.
Not every neighbor develops cancer.
Separate names with a comma.