I've seen some questions lately, so I'd like to summarize our experience with Trialnet and explain why I would do it all over again.
The Trialnet Story
January 25, 2008, our lives changed forever with Andrew's type 1 diagnosis. Our children were given the option of participating in Trialnet, but none of them were pressured to participate. Kaitlyn immediately volunteered, and she was the only child tested at the next doctor visit. She wanted to be a part of science and help doctors find out what caused diabetes. She was so eager that I'm not sure we thought too long about how it would feel if the results came back positive. Until they did. I won't lie. It felt like I'd been punched in the stomach...again. They explained that it didn't mean she would get diabetes, because some people with antibodies never get diabetes. They recommended a genetic study for a gene that they have found protects against diabetes and an oral glucose tolerance test. Her genetic study revealed that she did not have the protective gene. In 2008, she had four of five antibodies and was placed in the highest possible risk group with over a 50% chance of developing full type 1 diabetes within five years. The boys all one by one volunteered and tested negative. Kaitlyn began oral glucose tolerance tests every six months, and fell in love with the nurses who cared for her. She loved being doted on, and, yes, she loved getting paid to participate. She went every six months until she failed two tests in a row and was officially diagnosed on March 5, 2012. She is still doing great without insulin though. Her highest ever A1c has been 5.1.
So, we've lived everyone's worst fear. First antibodies and then diabetes. She was diagnosed so early though, that we could still be blissfully unaware. Do I hate diabetes? YES!!! Do I have any regrets about Trialnet? NO!!! I have several reasons why I'm glad we participated. But Kaitlyn is 13 now, and I thought you might like to hear first how she feels about it. I asked her the following questions and typed her responses.
Q: Would you encourage someone to do Trialnet?
I encourage it because it gives you some warning. Sure, it’s sad when you find out, but at least you’ll be prepared for it when it does happen.
Q: Did it drive you crazy worrying about it?
I wasn’t worried. I just kind of enjoyed myself and got to know the really sweet ladies.
Q: Do you ever wish you didn’t know?
No. I don’t wish I didn’t know, because then I’d be more devastated and less prepared. It would seem so sudden. At least now that I know I’m diabetic, I enjoy the short time that I have. I know I need to cherish things because it will be harder soon.
Obviously I've worried about her over the years. I grieved a bit when I found out she had antibodies, when she didn't have the protective gene, when she had her first impaired glucose tolerance test, when she failed the first test, and when she was diagnosed. But I have never regretted being a part of Trialnet.
Here's why:
1. Trialnet protected Kaitlyn's health and will protect her from metabolic memory.
Sure, we all know the symptoms of diabetes. But, may I add, that we all know the symptoms when the body is already really struggling with diabetes! We don't know when the blood sugars first start to rise. I don't like to think about metabolic memory much because I can see in hindsight that Andrew had symptoms long before diagnosis. His initial A1c proved he had high blood sugars for a long time. However, Trialnet has given me the opportunity to protect Kaitlyn from this very real threat:
"The concept of a “metabolic memory,” that is of diabetic vascular stresses persisting after glucose normalization, has been supported both in the laboratory and in the clinic and in both type 1 and type 2 diabetes. " ( http://jcem.endojournals.org/content/94/2/410.abstract)
It's the idea that once stressed, the body still remembers some of that destructive behavior. I wasn't able to protect Andrew. But I know this - Kaitlyn won't be in DKA at diagnosis. She won't have poor metabolic memory. She will be healthy and get insulin support as soon as she needs it. Her pancreas won't be burnt out like Andrew's was. We will support it and hopefully have a long, wonderful honeymoon. We will do everything we can to keep her as healthy as we can. For me, waiting until she shows excessive thirst and urination is not good enough!
2. We know much of what we know about the development of diabetes because of Trialnet.
An adult friend of mine was told that he got the flu, it attacked his pancreas, and he got diabetes that weekend. Now, we know that isn't really true. An illness may tip Kaitlyn over the edge where she needs insulin, but that trigger didn't cause it. This process is well under way. That is also the reason that we have prevention trials now. There is hope that we may learn how to prevent this disease even before we can cure it. That means none of my grandchildren will have this horrid disease. Those trials wouldn't even be thought about if not for what we've learned through Trialnet and similar trials.
3. Simple blood tests are giving clues to find a cure for our diabetic children.
They have found people who have antibodies but never get diabetes. They have found a protective gene that most of these people have in common. Within that is a clue. What does that gene do to protect them? Can we do the same thing for others to protect, treat, or cure??? They have learned to predict diabetes well with antibody testing. Surely, the functions of those antibodies hold clues as well.
4. Trialnet offers trials for prevention.
Trialnet has prevention trials for people who qualify. For example, oral insulin was proven to not prevent diabetes, except that it did have a delay effect in a small subgroup with high levels of a certain antibody, the only one Kaitlyn didn't have. The oral insulin has no side effects, at least that I know of, and may delay onset of symptoms by almost five years! Ask any diabetic if they would have taken a pill every day to have five more years before diabetes! There are a couple of new trials out now. I started Kaitlyn on some supplements after her diagnosis that my other children are not on. Her high bgs regulated and she has been doing great. She wouldn't have that support if we didn't know.
5. Trialnet set a positive framework in place for Kaitlyn before she needs it.
She loved, loved, loved the people at Trialnet. They were so positive and great models for her. She has been curious about diabetes and willing to learn long before she needs it. I'm not sure my other non-d kids can carb count, but she can because she wanted to learn. She has had the opportunity for a gentler intro into diabetes.
I wish I could take diabetes away from Andrew and keep Kaitlyn from getting it altogether. I have grieved in stages and will grieve again when Kaitlyn starts insulin. I know it isn't over. I can completely understand why some aren't willing to know. To me, the protective benefit of knowing early is so worth it. I don't check my other kids. Until diagnosis, I wouldn't check Kaitlyn unless I saw symptoms. Now, we check about two fastings a week and two after meals a week. We will call if either of those numbers starts to creep up. Hopefully, that will still be a long way away!!!
