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The first time I heard about screening my children for the earliest stages of type 1 diabetes (T1D), I immediately dismissed it. It was around 2017, and my first-born child was only two years old at the time. I certainly knew the signs and symptoms of this disease — I’ve lived with it for 25 years. I don’t need a blood test to tell me that my child has T1D, right?
“No, no,” said my friend, a CDCES who worked in a pediatric endocrinology clinic. “This is different. You’re not testing for the symptoms, and you’re not even testing for high blood sugar. You’re testing for the autoantibodies that can develop years before symptoms start.”
“Okay,” I said, “but there’s still no point because there’s nothing I can do about it if she does test positive.”
“Actually,” she said, “that’s not true. If she tests positive, there are therapies being studied right now that can hopefully delay the full onset of the disease.”
Alright, now I’m finally listening.
Spotting T1D years before needing insulin
As of today, I’ve screened both of my children twice. And I encourage you to do the same, because we know so much more about the development of this disease. If you/your child does test positive, you can discuss some very important options with their healthcare team.
Thanks to decades of research from a variety of organizations, we know some very cool things about the development of T1D.
- T1D autoantibodies: We know there are a variety of very specific T1D-related autoantibodies. Autoantibodies develop when your immune system begins attacking your own body. And we can test for those specific autoantibodies!
- Before you/your child 5 years old: We know most people have T1D-related autoantibodies before 5 years old — even if the full onset of the disease doesn’t occur until their teens or twenties.
- Three stages of T1D: We know there are three stages of T1D based on the presence of autoantibodies: Stage 1, Stage 2, and Stage 3. The earlier you screen your child for T1D, the more likely you can identify it in the earliest stages and take action.
- What triggers the full onset of the disease did not cause your T1D: There’s a big difference between the cause of T1D (which is still largely unknown) and the thing that triggered the full onset of T1D. For example, my whole family got the flu. About three weeks later, I was diagnosed with T1D at 13 years old. But the flu did not cause my T1D — I had likely started developing T1D a decade before my diagnosis. Anecdotally, many people have developed the full onset of T1D after a stressful event, illness, etc. While these triggers haven’t been confirmed closely in research, they are common stories.
- Family history of T1D doesn’t matter: We know that having a family member with T1D definitely increases you/your child’s risk of the disease, but family history doesn’t actually matter. In fact, 85 to 90 percent of people diagnosed with T1D have no family history of the disease — which means everybody should consider screening their children for the earliest stages of T1D. (That includes your kids, your sister’s kids, your neighbor’s kids, your child’s best friend and their siblings. Anybody.)
- Preventing DKA protects the brain: We know that even if you can’t delay or prevent the full onset of T1D, diagnosing it before blood glucose levels rise and insulin production plummets — leading to diabetes ketoacidosis — can have tremendous benefits. Research has found that DKA at diagnosis can permanently injure the brain.
- You have options: If you/your child tests positive for autoantibodies, you have options to discuss with your healthcare team!
What we know today is life-changing — but only if you take the time to screen your children or yourself for the earliest stages of T1D.
Understanding the stages of T1D that start before symptoms
The stages of T1D are related to the number of autoantibodies present combined with blood glucose levels.
- Stage 1: When two or more autoantibodies are present, but blood sugars are normal.
- Stage 2: When two or more autoantibodies are present, and blood sugars are abnormal but there are no other symptoms.
- Stage 3: When symptoms develop, blood sugar levels are persistently high, and insulin therapy is immediately necessary.
I get it: screening your children for T1D can be scary
Taking a toddler to the lab for a blood draw isn’t fun. Neither is pricking their finger at home. But it’s worth it.
My first daughter, Lucy, cried in anticipation of the needle and blood draw at the clinic, but she cooperated 100 percent. She held her arm out and didn’t fight. My second daughter, Violet, had to be bear-hugged in place while she fought like hell.
I hated it. But I knew what I’d hate even more was missing the opportunity to diagnose the earliest stages of T1D. I knew I’d never forgive myself for missing the opportunity to delay the full onset of T1D by potentially years and years. I knew that making my kids suffer a little bit was worth it. (And my mother, Grandma, would remind them that a little suffering builds character.)
I told my children about this, too. I explained to them: “We’ve gotta do this scary thing, because it can help us catch something very, very important in your blood. We’ve gotta do this for your health. It’s not gonna be fun, but we’ve gotta do it.”
It’s worth it. I screened them again a year or two later with at-home finger-prick kits that required just as much courage and convincing. Lucy’s second result came back with one autoantibody — but she had just undergone intensive surgery on her kidney and bladder a few months before, so we retested. The next result showed zero autoantibodies. The stress of her surgery may have triggered some temporary autoimmunity. Fingers crossed. —
Screen your children for type 1 diabetes. It’s worth it. You can do it. They can do it. And at the very least, like Grandma said, they’ll build a little more character in the process, too.
LEARN MORE: Detect Type 1 Diabetes Before Symptoms Start
EDITOR’S NOTE: This content was developed independently by T1D Exchange and was supported by a healthcare contribution from Sanofi.
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