TrialNet: Should we do it?


Bedtime thoughts from Orlando:

Mike and I are here at the CWD FFL conference with our sons, and TrialNet is here, too..  TrialNet screens relatives of people with type 1 diabetes for their risk of developing type 1.  As you’d probably expect, Mike and I worry about our sons’ risk for type 1 and getting them  screened is something we’ve discussed, and that I’ve written about, in the past.  

My general feeling has been that I don’t want to know.  I want to live as if diabetes is not going to happen, and if it does then I’ll deal with it.  Mike, until now, seemed to feel the same way.  But today, with TrialNet right there in the next room, Mike felt differently.  “We should test them,” he said.  

I gave him a WTF look.

“For science,” he said.  “We should do it for science.”

Maybe we should.  But I’m not ready to go there.  My sons, thankfully, are having a great time.  I don’t want them to think that we brought them here to find out if they’re going to get diabetes.  

On the flip side, CWD FFL is probably the only place in the world where having diabetes doesn’t seem like a bad thing.  So maybe after being here diabetes will seem less scary to my sons.  I love seeing how happy the kids are here, but it doesn’t make diabetes, or the risk of it, any less scary to me.  


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10 years ago

I have one son with T1D and 2 other children.  We had the other 2 screened a few years ago, once there were some clinical trials in prevention available.  One of the non-T1D children tested positive for 2 of the 4 antibodies.  He has been in a prevention trial for the past 2 years.  Of course we have no idea if he is getting placebo or not, but so far so good.  Additionally, if he develops a 3rd antibody there is another trial he could try.  I am glad to be helping science but even gladder to have the possibility… Read more »

10 years ago

Thanks for these comments.  Colleen, what you described is what I fear.  And I think you’re right.  If we do decide to test we should have a plan in place.


Colleen O
Colleen O
10 years ago

My daughter and husband have D so I had my son tested in the name of science.  At the time we had to do yearly testing.  He tested negative the first year and positive the second year for 2 of the 4 auto antibodies.  We got was a phone call 3 months after the labs were done saying “guess what he is positive this year”.  There was nothing we could do except wait and worry.   There were no further studies in our local area.  If we wanted to participate in a further study we would have had to go… Read more »

Jane Kokernak
10 years ago

My parents, siblings, and I participated in TrialNet. Interestingly, they were not at the time interested in testing my kids. We don’t have the antibodies or an identifiable gene, so no clues as to my siblings’ likelihood of developing D (beyond my brother Brian, who has Type 1 like me), but we did learn some other interesting, positive things about our shared genes. Did you know, for example, there are protective genes, that may be implicated in my brother and I both being complication-free after more than 20 years each of living with D? It can’t hurt to find out… Read more »

Mike Hoskins
10 years ago

I have no idea what you should do. We don’t even have kids yet, and that’s something I wrestle with myself on already… And I’m torn, for the exact reasons you’ve outlined. Overall, I think I might in your situation. In the name of science. Just like your man with a great name says (and that’s not what sways me, I swear!!!). I’m a puzzle person, and I think that anything I can do in the grand scheme to help put another piece of that puzzle in place is worth it. Sure, there’s the whole downfall of “knowing”… but that’s… Read more »

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