Have you heard of TEDDY? Not the bear, The Environmental Determinants of Diabetes in the Young. They came into our hospital room when been was just about a day old and asked us if we’d like to participate in the study. They’d take some of his cord blood and test it for the genetic markers that can possibly lead to type 1 diabetes. I was half dead and was willing to say yes to anyone as long as it would get them out of the room, so off went signed papers to have Ben’s cord blood tested for type 1 diabetes markers.
I really didn’t worry about it. As far as I knew, no one in my family every had type 1 diabetes. Type 2, yes but no type 1. I assumed we’d just hear back that everything was fine, nothing to worry about, go on with our lives, whatever.
So this week, when we received a letter in the mail from TEDDY that said, “Call us soon or we’ll call you”, I got a little worried. I called once and no one was in. I figured, “Eh, they’ll call us” so I didn’t leave a message. It kept bugging me. I called back today.
Apparently, Ben has the genetic markers for type 1 diabetes. While this doesn’t mean he’ll definitely get it, he has a 3x greater risk of developing it than the normal population (1:33 vs 1:300). After a long, horrifying shpeel on what type 1 diabetes is and what it does to the body, she asked us to be a part of the continuing TEDDY study. It would involve taking him in 4x a year to have is blood drawn and height & weight measured. We’d have to keep records of his food, illnesses, pets, stresses, etc. We’d have to send in a poo sample every month. At 9 months, they’d take a sample of our tap water. At 24 months, they’d clip his toenails and test them, they’ll also test for Celiac disease. This would last for 15 years.
It’s a helluva lot to start doing but we’ve decided to do so for two main reasons. The first is very selfish. They’re going to keep close tabs on him. If he should have any problems, we’ll know immediately and they’ll be able to point us towards resources to help. The second reason is mostly because of her. This woman works everyday to keep things okay for her kids, and she works damn hard at it. Her daughter Hayleigh has both type 1 diabetes and Celiac disease. I’m in awe every moment of her attitude towards it. Cupcakes for everyone? No problem. Kris will find a way to make them both okay for Hayleigh AND tasty for everyone else. Someone being an ass at her school? Psh. Kris’ll run out and bring treats to even things out a little. I couldn’t imagine being in her shoes and doing as wonderful of a job as she does. So because of Hayleigh, I’d like to participate in anything that might lead to helping find a reason for this disease and, possibly, eventually finding a cure.
They say his risk would be 2x greater than what it is if he had a parent or sibling with type 1 diabetes. Luckily, he does not, but I was surprised to learn that every single one of my great aunts on my dad’s mom’s side (10 aunts in total) died of type 1 diabetes. I also found out my grandmother has it as well but has luckily never needed insulin. And, apparently, my dad’s son from his first marriage has a son with type 1, too. It was a shocker to go from thinking we had no one in our family with type 1, to having multiple people with it. It’s a little worrisome. However, at the same time, it’s pretty likely I have the same genetic markers and I don’t have it myself. I’m trying to be ridiculously unscientific and say that’s a really good sign. I’m also thinking that it’s not a ridiculous idea that most Native American’s have these genetic markers.
So, they say about 1 in 20 kids in the study develop one autoantibody (a sign that the body’s attacking the cells that make insulin) and 1 in 40 develop 2 or more. I pray Ben is in that 19 that doesn’t.