TrialNet Pathway to Prevention Study

We’re in Seattle this week for another TrialNet Pathway to Prevention Study test, or in this case two tests. We’ve been traveling to Seattle several times a year to have our youngest son participate in the TrialNet Type One Diabetic studies. Anyone who has a relative with Type One Diabetes can get a simple blood test and find out if they have the autoantibodies that indicate they’ll develop the disease. If they test positive for the autoantibodies they can choose to participate in several different studies, there are no obligations though, you can say no to any clinical trials. But when you say yes to a TrialNet Pathway to Prevention Study, you’re helping crush autoimmune diseases.

TrialNet Study

Type One Diabetes

This all started 15 years ago when our oldest son was just 9 years old, out of the blue he developed Type 1 Diabetes. After ten days in ICU with Diabetic Keto Acidosis we emerged to a whole new world. Not an easy world. The life of a T1D is all about balancing food, insulin, and exercise, the life of a tween/teen boy is all about food and how much can they eat, all day long. Talk about an extreme balancing act. It’s so incredibly hard to be different as a teen, being a diabetic makes you completely different. We struggled with our oldest, we tried to keep his life normal but as the years passed he became defiant and refused to care for himself. We fought, we enabled, we chased him down with insulin, we were tough but in hindsight we should have been tougher. Or at least we think that now. Or not. I’m not sure how we could have done it all differently but I wish we could go back and try again.

One More Time

A few years ago I heard a talk show on our local NPR station about TrialNet and their testing of relatives of Type One Diabetics. I thought “well it would sure be nice to get myself and these two boys tested and then we know we’re not Type Ones” Fast forward a few months later when two letters from TrialNet showed up. One for myself and one for our middle son, telling us we didn’t have the autoantibodies. Our youngest, Declan, didn’t get a letter but I just assumed his was lost in the mail. I NEVER thought about it after that. Or at least for a few months anyway. One day out of the blue, I received a phone call with the news that Declan’s test results had not been lost but that they were in fact positive.He’d tested positive for 4/5 of the autoantibodies that meant he’s going to develop Type One Diabetes.

 

My husband and I spoke to Declan after getting over the shock of possibly having another Type One diabetic kid. We told him he wasn’t a diabetic YET but that he’d probably develop Type 1 in the next five years. That’s a crushing discussion to have with your 9 year old. He had time before he needed to start insulin, if ever because testing positive didn’t mean he WOULD but that he had a very good chance to develop it.  We talked about the studies being conducted to help scientists understand and eradicate autoimmune diseases, especially Type One Diabetes. While we desperately wanted him to participate in a study to help possibly delay the onset of T1D but we knew it had to be his choice. Not only would participating in a study help scientists but it could help him as well. Thankfully he decided to participate in a study for oral insulin trials and we started coming to Seattle to get him started.

Study

Fast forward several years, many study visits to Seattle to meet with the study team, a lot of Oral Glucose Tolerance Tests, a couple years of oral insulin pills and we come to last January when Dec failed his OGTT. Twice. Which meant he’s moved from having a fairly decent functioning pancreas, to one that’s starting to fail. Which basically means onset of T1D. He’s still in a honeymoon phase, not fully T1D but definitely moving in that direction. Now our life includes more endocrinologist visits, more in-depth eye exams and daily blood sugar tests. As well we still travel to Seattle for testing, he’s joined a different study, one that focuses on the transition between being non-diabetic and the move to being a T1D. This time and next he takes two tests, we spend three days and he fasts, then carb loads, drinks medical things, and gets plenty of blood draws. It’s not pleasant but he does it.

I encourage anyone with close family members with Type One Diabetics to contact TrialNet for a free blood test. You can choose to participate in a study or not participate if you wish, there’s no obligation ever. We feel pretty strongly about this, we encourage everyone to get tested. In our own experience as parents of a diabetic we’ve lived through: low blood sugars, high blood sugars, Intensive Care stays, seizures, Diabetic Keto Acidosis, kidney failure, neuropathy, and a multitude of other harder to put a finger on side effects of diabetes. And if we can help prevent even ONE more family from living through what we’ve been through we will do whatever we can to help facilitate the end of Type One Diabetes.