A Family Perspective on the Benefits of Participating in TrialNet

Denise L Kids

The picture above is our two boys holding their TrialNet letters stating that neither of them currently has any type 1 diabetes antibodies. I’m hoping that our family participating in preventative trials like these paves the way to (in the near future) no child or adult having to be diagnosed with type 1 diabetes. It’s my dream that eventually everyone will undergo routine antibody screenings, and as their test results warrant, those at risk will be able to be stopped before the disease takes hold and destroys their beta cells.

I was diagnosed with type 1 diabetes as a middle-aged adult at age 37 (18 months ago). As I read Glu’s informative article about TrialNet, it reminded me how TrialNet helped me get past certain fears I had about the genetic chances of me passing this disease on to our two young boys, who are currently ages 4 and 5. Putting my own fears for myself aside, as a mother I was terrified that our boys would almost definitely be struck with the disease since I’d carried them, and I thought that whatever antibodies were in my DNA certainly must have been passed along to them during gestation.

I soon learned some surprising facts. Researchers at the renowned Joslin Diabetes Center, an affiliate of Harvard, have found that the risk for a child of a parent with type 1 diabetes is lower if it is the mother—rather than the father—who has type 1 diabetes. Strange, but that’s what the research shows. They found that if the father has it, the risk is about 10% that his child will develop type 1 diabetes—the same as the risk to a sibling of an affected child. On the other hand, if the mother has type 1 diabetes and is age 25 or younger when the child is born, the risk is reduced to about 4%, and if the mother is over age 25, the risk drops to 1%—virtually the same as the average American.

So I took a little bit of comfort in these statistics with regard to our children, but it still wasn’t enough to keep my terror at bay for them, so then through Google searches, I found TrialNet screens relatives of people with type 1 for the antibodies that leave them susceptible. The presence of these antibodies signify that the body could mount an attack on the beta cells in the pancreas. I immediately saw the following multiple benefits to enrolling them in the study, and no real drawbacks to doing it:

  1. Odds were highly likely that our boys’ tests were going to come back negative for all 5 known type 1 antibodies, and getting that reassurance would calm my mind for our children from year to year (Antibodies can develop at any time, so annual testing is recommended). I wouldn’t have to prick their fingers every time the tiniest change in their drinking habits occurred or every time they got sick. I knew if everything came back negative as the odds were predicting, that I wouldn’t always be casting a dark diabetes cloud over them.
  2. You can’t run from your type 1 genetic predisposition, so if they did have any of the antibodies, I wanted to be informed so we could stay on top of it and monitor them closely. And even if they would have been positive for one or more of the antibodies doesn’t necessarily mean they’ll develop type 1 soon or ever.
  3. I believe in the philosophy, “Just don’t do nothing,” so TrialNet is a small way for our family to help researchers help the T1D community by learning more about how type 1 develops, who it develops in, and how to prevent it in those susceptible to it. Knowing that our family is playing a small part in helping uncover the reasons that T1 develops gives us a sense of doing something that will eventually help to eradicate type 1 completely. If more and more of us contribute to research, we can move the needle for researchers to find cure, reversal, and prevention strategies. Without those affected participating in various studies, that makes it all the more difficult for researchers to crack the code on what will one day stop this disease from happening to anyone, so the more of us that participate in these types of initiatives, the quicker a practical cure will be available for all.
  4. There’s a prevention arm to the TrialNet study, so if our boys would ever develop any antibodies, at least we get to attempt a trial to intervene that could delay or prevent a type 1 diagnosis for them—an attempt that almost none of us current type 1s ever had. I believe that research is going to be able to prevent type 1 diabetes before they can cure it, so if our participation helps this diagnosis to be averted in the generations to come, then our participation has been well worth it.
  5. It costs nothing, not even postage. All costs associated with TrialNet are fully funded by NIH, JDRF, ADA, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institute of Allergy and Infectious Diseases (NIAID), and National Institute of Child Health and Human Development (NICHD).
  6. Convenience: If there’s a participating clinic center in close proximity to you, you can contact them and get screened there. If not, as we chose to do, TrialNet headquarters will send you the paperwork and testing kit by mail, then you take the testing kit and your participant to a Quest Diagnostics center in your area, they draw a tube of blood, and put it in the pre-paid FedEx envelope, and you drop it off at any FedEx shipping location.
  7. Your doctor doesn’t need to approve anything for participation in TrialNet. If the participant wants to share the information with their doctor, they can, but they’re not obligated to do so.

For those wondering if they should get young children in their family screened, my opinion is absolutely. It is a simple and quick blood draw of a small tube of blood. Children pick up on the vibes and energy we display, so if you position their testing with only positive talk and actions, they will be much less apprehensive about getting their blood drawn. We showed our young boys a YouTube video of a child getting his blood drawn and explained to them that it would hurt a little bit for just a couple of seconds, and then they would be all done with it until the following year. Neither our 3-year-old nor 4-year-old cried at all when they had it done. And for their following year’s tests, they remembered how anti-climactic it had been that first year, so there was nothing to it for them the second time.

I urge all eligible family members of type 1s to participate in TrialNet. More detailed information about who is eligible to participate can be found here at the TrialNet website.

Denise Lee–DeniseL


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