Would you


(Coolwater) #1

Nominate yourself to be a test subject for a possible cure for diabetes?

I don't know why but I always think about this. Not too sure if I would do it, but I guess if the complications were nothing major to none then I would do it. I guess without people who would volunteer to do this we would never find a cure.

 

What do you guys think?


(JThompson94) #2

I would totally nominate myself for a study. Like you mentioned, we would never come as close to a cure like we are now without people coming forth to help!

Cheers,

Jennifer


(A-D) #3

Riaan,

I am somewhat reserved with what I am willing to try but I try to keep an eye out on http://www.clinicaltrials.gov/ and when things that come up that I'd be willing to do, I at least contact the researchers and find out more information. 

I am not willing to do anything that requires long term use of immunosuppresant therapy or uses too many chemicals, LOL - yeah - i can hope, eh?

Cheers,

A-D


(red) #4

Being a test patient is a huge commitment but there are two really big benefits:

1.) You get to participate in something that can help find a cure (we'll NEVER get there without doing actual clinical tests)

2.) You may be the first to take advantage of some of the most cutting edge research in diabetes

My family participated in one clinical trial that had an obvious positive impact with extending the honeymoon period of our early dianosis. You can find out more at these web pages -  http://www.diabetestrialnet.org/ and http://www.jdrf.org/index.cfm?fuseaction=home.viewPage&page_id=3AD08F58-46A6-482C-A3AA315CAE4AF0A8


(Anonymous) #5

I've always pondered that myself. Of course, I'd be paranoid about complications during the clinical trial, but that's not on my mind as much as the idea of being cured. It's not that a cure wouldn't be great. I've only had diabetes for three years, but (sometimes I think this has to do with my being so sick pre-diagnosis) I don't remember that much from before being diagnosed. Now it seems to me like diabetes is more "my" life than being healthy could be. For example, I used to be on injections, and I took Lantus shots every night at 9 pm, so now that I am on the pump, and even though I have been for half a year, that's what I think about every night at 9. It's like it's stuck in my head. I think if I were cured, every time I ate or excercised, slept through the night without waking up to check my bg, or simply went out without my supplies, it'd feel wrong. In a nutshell, I think the concept of being cured and relearning to live again for a second time scares me. I'll participate in trials to gather information, but I think I'll pass on the one for a cure :)


(Carolyn) #6

I've thought about this on various occasions.  I guess my decision would all depend on how much I believed in the procedure being done.  If I had great faith in test, I would most definately volunteer.  But if I had any reservations, I don't think I would.  Sometimes I have nightmares that they find a cure, and then my diabetes comes back right after I eat a big meal full of carbs.  I know it's stupid to worry about since there is not even a cure yet, but I just keep praying that we find a cure in my lifetime:)


(Coolwater) #7

Thanks for your opinions guys, I totally know where you all are coming from! :)


(kater) #8

I live in Edmonton, Alberta, infamous among diabetics for being the home of the Edmonton Protocol. I actually got to meet Dr. James Shapiro and follow him around for a whole day. Totally wicked. But there has recently been a call for patients willing to do the treatment, and I'm still wondering if it would be worth getting an Islet transplant. I mean, diabetes vs. anti-rejection drugs? It's still a toss-up for me.


(whatruhere4) #9

i was asked to be in a study by my doctor about those inhalers. i decided i didnt want to do it because that kinda stuff scares me. i'd rather be in a survey type thing.


(Coolwater) #10

[quote user="Melissa AKA Mel"]

i was asked to be in a study by my doctor about those inhalers. i decided i didnt want to do it because that kinda stuff scares me. i'd rather be in a survey type thing.

[/quote]

Yeah I know what you mean hehe :)

 


(figure skater girl) #11

[quote user="kater"]

I live in Edmonton, Alberta, infamous among diabetics for being the home of the Edmonton Protocol. I actually got to meet Dr. James Shapiro and follow him around for a whole day. Totally wicked. But there has recently been a call for patients willing to do the treatment, and I'm still wondering if it would be worth getting an Islet transplant. I mean, diabetes vs. anti-rejection drugs? It's still a toss-up for me.

[/quote]

 

I think i heard my doctor talk about that. i heard it was a pancreas transplant.


(kater) #12

[quote user="figure skater girl"]

I think i heard my doctor talk about that. i heard it was a pancreas transplant.

[/quote]

It's just a transplant of the insulin-producing islet cells. The procedure is actually little more than an injection. Pretty neat.

 


(JamesChambers) #13

I read about teenager in Brazil a while back that did a crazy chemo treatment after catching T1...it actually worked, but he was in a lab for a week, isolated from Mom and Dad, constant barrage of chemicals.  They effectively killed his immune system altogether and then slowly rebuilt it.

That's one brave kid. 

I would hope, given the opportunity to make a difference for millions of others, that I would take it but I don't know that I have the courage.  

If you told me, 'if you do X then Beemer'd be cured' I'd likely do it in a heartbeat, but just a 'hey, we want to see what happens if...', not so much my thing.


(Dylan404) #14

Alyssa that is interesting, but I think given more time living with diabetes you would change your mind. Not that it gets worse or anything, but I think eventually you do realize it is quite a big weight to carry around, and frankly our lives would be better without it. People who are afflicted with diabetes develop a lot of positive traits; empathy, problem solving skills, responsibility, maturity to name a few, but in the end I don't think they outweigh living with the disease. So, that being said I would participate in a trial assuming there was no threatening side effects that occured in the mice studies. 


(A-D) #15

I think that my willingness to lab-ratt-myself-out reflects my political and donation philosophies.  I would volunteer to try any cure which posed fewer risks than benefits.  I would not volunteer for a study where I had to compromise my immune system to get the cure because for me, those risks are more damaging than the disease with which I am living.  I would be willing to do something that was painful or frightening or something that may not work.  I guess I have my own scale of acceptable and reasonable risks and damages and I would be willing to try anything that fit inside those bounds.

Cheers,

A-D


(joe) #16

I think I would but it would depend on the study.  haha I am so chicken.

There is another issue.  even Phase III Clinical trials must have a control group.  Neither you nor your doctor would know if you were getting the therapy or the placebo, it's not a deal breaker but IMO it's something to think about.


(A-D) #17

 

Joe,

This is where my stupidity induced bravery comes in... LOL - For me, if I were deterred by what I don’t or can’t know, I am pretty sure I’d not make it out the front door in the morning…  ;)

Cheers!

A-D

 


(cby5736) #18

I am currently trying to get accepted into a clinical trial for islet cell transplant in California.  I have completed my pre-qualification tests and hoping to have whether I'm approved or not.  I have, off and on, researched pancreas and islet cell transplants since 1997.  I have been a diabetic for 31 years now and have had several complications resulting from the disease, including a kidney transplant.  I have had NO problems whatsoever to the anti-rejection drugs.  I am willing to answer ANY questions for those who are just "wondering" about this.  I would LOVE to find someone who has had the actual cell transplant as well, along with anyone who has had a successful pancreas transplant (Mine didn't go so well back in 1999).

 

Thanks!

Courtney


(cby5736) #19

Yes!  And currently doing so through City of Hope in California. This is a clinical trial that foolws the Edmonton Protocol in Alberta.  I have done with the pre-qualifying tests and waiting to hear if I'm approved for the program.  If anyone knows of someone else doing this and would like to call or if you are interested in asking questions, feel FREE to email me!  I would also like to talk to those who had a full organ pancreas transplant (mine didn't work out so well).


(cby5736) #20

I HEAR YA!!!!! and totally agree! 

 

Courtney