BT1 Chat: Why Screening for Type 1 Diabetes Matters
Editorial note: This interview is about Ginger Vieira’s experience using both TrialNet and T1Detect to screen her children for autoantibodies related to type 1 diabetes. Learn more about Ginger’s experience here: This is Why I Screen My Kids for T1D.
This resource was created in partnership with JDRF, an active partner of Beyond Type 1 at the time of publication, through the JDRF – Beyond Type 1 Alliance. Now everyone, regardless of relation to someone with confirmed type 1 diabetes (T1D), is eligible to be screened for T1D antibodies. If you or someone you love is interested in T1D screening, click here.
The following transcript has been edited for length and clarity.
Todd Boudreaux: Hi everybody, my name’s Todd Boudreaux. I am the Director of Publishing at Beyond Type 1 and I’m really excited to be talking to my colleague today, Ginger Vieira. Ginger, do you want to introduce yourself really quickly?
Ginger Vieira: Sure, I’m Ginger Vieira. I am digital content manager at Beyond Type 1. I also have type 1 diabetes and celiac and fibromyalgia and a touch of thyroid mis-production there, too.
Great. And I guess I should have said at the top today we will be focusing mostly on screening for T1D, autoantibodies and Ginger has had some experience with that, I have not. I’ve also lived with T1D. I was diagnosed when I was 13 years old. Ginger, how old were you when you were diagnosed?
Also 13. 1999?
2000. Do you remember how old you were when you found out about screening for T1D?
I did know about it pretty early because I have a twin brother and he has no autoimmune diseases. TrialNet, which I think was really the first to start the research on screening for T1D and autoantibodies, he agreed to doing a blood draw for TrialNet’s research at the time.
It’s still like 20 years ago, around the time of your diagnosis. And do you have anybody else in your family with T1D? How old are your children?
No, but I do have several people with hypothyroidism. So that’s something. My daughters are 4.5 years old and almost 7 years old, neither of whom have T1D.
So it was part of your thinking in getting them tested or screened: if they are positive, you’ll be able to enroll them in clinical trials—was that one of the reasons you wanted to do it?
Yeah. I’m a proactive gal. I wouldn’t want to do nothing if there was potential to delay the full onset of the disease. If you can delay that by even three years…the difference between a 3-year-old who is not rational and cannot take direction…and a 6-year-old, that’s huge.
I didn’t really learn about the value of having them screened until my oldest was two, almost 3 years old. That was when my friend who works in diabetes research explained, “There is a good reason to get them screened because there are these studies going on right now that are proving to hopefully delay at the very least the full onset of the disease.” When she explained that to me, I was like, I should really follow through on this.
The first time I screened them through TrialNet is a little more complicated, because TrialNet is an actual research study, you’re enrolling in their research. They send you a kit that you then have to take to a blood draw lab that works with the right kind of transportation. If you go to Quest Diagnostics website and look up locations, then you can find what labs work with them. I went to an urgent care that used Quest Diagnostics for their blood work.
My first child cried, but she actually didn’t need to be restrained, because she’s such a cooperative little thing. The second child screamed and fought like hell to get out of the room. So I had to bear hug her for that which is just overwhelming and stressful.
I can’t imagine having to do that. I remember being terrified of shots when I was that age.
Is stressful for every parent and the child. The reason I still went is because I just thought in my head: what if, right now, they have two or three autoantibodies and I could actually have done something to delay the full onset?
The results were for both through TrialNet were zero autoantibodies. TrialNet has learned through that research that if a child doesn’t have two or more autoantibodies before the age of five, they likely won’t develop T1D even years down the road.
Okay. Knowing that it was very unlikely that your daughter, since they both were negative under age five would develop T1D, you still wanted to continue testing them. Why and then how did you go about doing that?
Well, I have three autoimmune diseases. And I just always hope that their father’s genetics, where there’s no autoimmune disease in the family, will water my genetics down remarkably. And that’s just like my ongoing hope—and his respect for speed limits. He’s good at that, too. But I still just appreciate the science of being able to know, and they weren’t five yet so why not test them again? I probably wouldn’t have signed up to keep doing the intravenous blood draw.
But when JDRF’s T1Detect at-home kit came out and it’s only $55, I was like, why not? It seemed silly not to because it’s affordable and it’s so simple at home. Far less stressful for everyone than going to the lab.
It’s a finger prick. And it really is more like two to three finger pricks because you can’t really get enough blood for the test out of one finger prick. But basically in this little card, there’s five circles and you have to fill in at least three of them with enough blood. And so it looks easy but once you start taking that little 3-year-old’s finger and dotting blood on there, it’s like, this is going to take more blood than I thought. We’ve done I think three of these now because my oldest tested positive for one autoantibody a year ago. And that obviously was not fun to see, because my brain immediately goes to “What if one becomes two?” Because they don’t ring any alarms until it’s two.
She had gone from zero to one?
Right. I did have the opportunity to interview one of the researchers at JDRF, and he said, “Yes, one can become two, but one can also go away. You can have kind of transient autoimmunity that comes and goes because our bodies are constantly working to protect us from a ton of things.”
And he did encourage me to test to her again, six months to a year later. And I almost waited six months. So I did test her six months later and it was back to zero. Looking back at when she tested positive for one, she had actually just had major surgery on her kidneys and her bladder, she had a structural issue that she was born with that was causing issues. That surgery was three months before her test. So the stress of surgery on her system could have potentially led to that one, but it wouldn’t have gone away if it was really the early stages of T1D, so that was a relief when the results came back at zero.
So reasons why you would want to get your child screened for T1D include potentially enrolling them in a trial treatment to delay the full onset, and…
Well, let’s say that you can’t prevent or delay, right? It’s still worth getting screened to catch the earliest stages of the disease because most children are diagnosed when they’re in DKA, diabetic ketoacidosis. Blood sugars are 400, 500, 600, or higher. And just this past year at the ADA scientific sessions, they presented a lot of research on how much damage DKA at diagnosis actually can do to our brain. And that people who are diagnosed when it’s already progressed to DKA have a more difficult time managing their blood sugars throughout the rest of the years of their life with T1D.
DKA at diagnosis can be a predictor of your life with diabetes, I think.
Right. If you know that your child has two or more autoantibodies and it might be 10 years down the road that their actual diagnosis and symptoms come up, you can still monitor that and keep an eye on it and start them on insulin so that they never spend a month with blood sugars at 500 mg/dL the way I did. I think that’s really worth it.
So avoiding DKA and then the other one is there actually are trials now that can prevent or well, not prevent necessarily, but that can delay and for some people enrolled in the trials, they still haven’t developed diabetes, so they can potentially prevent.
Yeah. They haven’t really put a period at the end of the sentence, because they don’t know the full potential yet, but it looks like at least an average of three years of delaying the full onset in a lot of people.
Three years is a lot.
It’s a lot. If this research had been known when my kids were really little and this at-home kit existed, I would’ve gladly done this test on my children when they were infants. Even if they were not old enough to enroll in a study at three years old. I would’ve done it sooner if I had what we have today.
I think that’s it Ginger, unless there’s anything else you wanted to say to wrap?
I think it’s a really worthwhile thing to do and encourage even the families that you know who don’t have any T1D in their family to do it because 93 percent of the new cases of T1D are in families with no history in the family.
And it’s pretty affordable, it’s $55 off but even if that is a little pricey, JDRF does have a program where you can get it at a lower cost, right?
It brings it down to $10 plus tax of the subsidy.
Ginger, thanks so much for talking to me today.