Seventeen years ago, I had a decision to make. Would I enrol our soon-to-be-born baby in research that would tell us if she had any of the antibodies for type 1 diabetes?
I thought about it long and hard. Aaron and I spoke about it a lot. He wanted to support me with whatever I thought would be best. In the end, we decided not to do it. Even before our daughter was born there was a dread that I could barely give word to – I was terrified that I would be responsible for passing on my diabetes to my baby. That feeling hasn’t gone, by the way. I have spent a lot of hours working through it with a psychologist to try to understand the source of the anxiety and learn to manage the fear in a way that doesn’t become all encompassing. Because there were times that I felt paralysed with that fear. I knew I needed to get through that.
I felt horribly guilty about not signing her up straight away and registering her in research. When I returned to work after maternity leave, there was a trial that was in full recruitment mode, and I once again faced the decision. I was actively promoting this study through my work, and speaking to the researchers a lot. A couple of times, I asked if I could speak with them in a personal rather than professional capacity and explain my reticence to enrol my daughter, even though I could understand why the work was so important. I asked for their advice and guidance, and they were always so wonderfully kind and understanding when I said that I simply didn’t feel that I could proceed. I think that part of the reason was that there wasn’t really all that much that could be done if it was identified that she did indeed have one or more of the islet autoantibodies.
Over the last couple of years, there has been a lot of interest and excitement in research into prevention and delay of type 1 diabetes. That ‘p’ word that has only ever been attached to type 2 diabetes now very firmly has a place when it comes to type 1 diabetes. At the ADC earlier this month, I listened to a couple of hours of talks from researchers who were talking all about screening for type 1 diabetes, and interventions that are taking place around the world with remarkable results.
The Type 1 Screen program has been running in Australia since 2018. It is open to relatives of someone with type 1 diabetes, aged 2 – 30 years. After initial screening, people without antibodies are screened every five years; people with antibodies are screened annually. Up until now, screening has been by doing a pathology blood test. However, home collection is being developed and, at the time of the presentation, was about to be launched. Home collection will be done by using blood from a finger prick.
So, what are the benefits of screening for type 1 diabetes? Well, there are many!
Early diagnosis (of anything) is a good thing! In a perfect world, early diagnosis means early treatment which means better outcomes. It also helps people and families prepare for progression to diabetes.
Screening reduces the risk of DKA at diagnosis. While that may make for a less traumatic diagnosis experience, there are also linger term benefits for this. DKA at diagnosis increases the risk of recurrent DKA, a higher A1c and increases the risk of diabetes-related complications.
Prevention is on the horizon! Knowing people who are at risk of type 1 diabetes means employing interventions that have the potential to delay, and may one day prevent, type 1 diabetes. Research using the drug Teplizumab delayed the onset of type 1 diabetes by two years.
Researchers and clinicians are talking about stages of type 1 diabetes and this is where it gets super interesting. Stage three type 1 diabetes I diagnosis and, typically, that’s where treatment starts. But in the future, it’s possible that treatment, including glucose monitoring, could be routine for stages one and two.
I listened to all this carefully and one thing that was clear to me: even seventeen years later, the emotional impact of this is significant. Thankfully, Dr Christel Hendrieckxs from the ACBRD is part of the project team for this work here in Australia. It goes without saying that this is about a lot more than just early diagnosis of type 1 diabetes. There is also the impact on the family, especially if someone in that family already has type 1 diabetes. The mother guilt I have at the thought of passing on diabetes to my daughter is by no means a small thing. I know a number of other parents with diabetes who have similar thoughts.
After that session, I asked my sixteen, almost seventeen, year old how she would feel about enrolling in Type 1 Screen. It’s completely up to her now – I am happy to chat about it, and tell her all about the program, but ultimately, it’s her decision. She understands why I was reluctant to enrol her when she was tiny, but now, I am giving her the option to get involved, and she needs to make her own decision which we’ll fully support. I don’t know what she will decide, but the seed has been planted, and I am here to chat with her about it, and organise times to meet with the researchers too if she’d like.
Watch my Q&A with A/Professor John Wentworth from Type 1 Screen about getting involved in this research.
Diabetogenic 
3 comments
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September 8, 2021 at 3:24 am
Whitney
I’m the daughter of a T1 and I was raised that I may get it one day. Before I could even understand that, I was being taught carb counting. I thought my mom was just being weird about teaching me math at home constantly. I learned more about volume and measurements.
My dad showed me how he changed his infusion sites. “Tell dad dinner will be ready in 20” was a normal phrase. I learned through modeling and example.
As I got order to understand what this meant for me, my family would point out Olympic level athletes with T1D.
My parents would let me watch many R rated movies, but never Steel Magnolias. They shielded me as much from negative T1D associations as they would shield me from porn or foul language.
Later, as I was diagnosed in my 20s, I had way less to learn. I knew how to carb count. I thought measuring your food was the norm. I now had something to put in the spot in the fridge for insulin.
I would argue against the idea that you “can’t do anything about it” if you find out your kid has the gene. There’s potentially a lot of time between now and diagnosis (assuming there even is a diagnosis!) to learn. Building those tools to help the future. Connecting with a supportive community. Actively fighting against bad mindsets.
And if they never get T1? Does knowing how to carb count hurt? The worst that could come from being raised like that, is simply having a better understanding of my dad’s situation.
Our doctors are refusing to screen my son. They even are trying to demand I come into the pediatrician if I want to test his blood sugar. He’s one now and he’s learning what cylinders are bigger than others. Eventually we’ll move into how to measure (and eyeball) food. Then we’ll learn nutrition labels. If all goes well, he’ll simply have some extra math and science practice!
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September 8, 2021 at 10:50 am
RenzaS / Diabetogenic
Thank you so much for sharing your story.
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September 8, 2021 at 11:42 am
Rick Phillips
Had TrialNet been available in the US 40 years ago, my sons would have signed up as soon as possible. I used to worry obsessively. Would participation have been too helpful to them? Yes, to some extent. Was it really for me? Yes indeed.
Today I would still do it. I tried to convince my sons to do it with their children. Neither did. Why am I so passionate about it? Well, three straight generations of T1D’s. Early deaths, lost eyes, kidneys, and limbs.
Buy a person 3 years, until full onset? Most important, know that the my sons might have contributed to the well-being of their children? Yeah, that is mostly it, I think.
A few weeks ago, one of the grandchildren asked me what their grandmother did for diabetes. I pointed with pride to my pump and told them she was a control subject in an early insulin pump study. A device she was never able to use.
Then they asked what I had done for diabetes. I said I refused to be quiet. They thought for a second and asked, what will they do for diabetes. I said live.
Live, that is the most important thing. Live.
rick
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