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.

More information about Type 1 Screen can be found here